What Participants Are Saying

July Volunteers of the Month - Ginny S. and Reilly E.

Each month we honor a volunteer who has gone the extra mile in the course of their service. For the month of July 2008 we are proud to announce the Volunteers of the Month, Ginny S. and Reilly E. of Orange County, CA!

Ginny says: "When I first got involved with Extra Hands for ALS, I assumed the experience would have an effect on my life. I was sure participating in this would bring me a wonderful sense of helping my community, but I would never have predicted it would change the way I looked at and lived my life. From the first time I met Mary (the mother of my first ALS family), I was so impressed by her spirit. She had this inexplicable way of taking all the happiness in her life and shining it out into the room around her. Reilly and I were always fortunate to bask in that light, and while technically we spent those two hours a week doing tasks to help her and her husband Jack, I know she gave us something much more valuable than a clean patio. Her strength and pure joy in life rather than bitterness in the face of her terminal illness were striking, and put my life in perspective. I had, have, so many things to be happy about, and by following Mary's example I lead a much happier, fuller life just by realizing what a wonderful blessing life itself is. I only knew Mary for less than a year, but my experience with her impacted me in a way people I have known for years never could. Every cloud has a silver lining, and while the fact ALS exists is terrible, the fact there are people in the world with the kindness of heart and strength of character to first of all live despite having the disease and secondly put so much effort into making organizations like Extra Hands for ALS gives me hope. It gives me hope that one day we will find a cure for ALS, and people like Mary will be able to shine their full brilliance upon their friends and families for a very long time. I hope for a brighter future, and I believe we can make a difference."

Reilly says: "The wonderful thing about Extra Hands for ALS is that you are able to personally witness the effect your work has on others, to truly see you are making a difference in someone?s life. What is more, as you get to know your Extra Hands family, you start to realize they are making a difference in your life as well. When I first met Mary, it was hard to imagine that I was looking at a women suffering from a terminal illness, she exuded vitality and a happiness that was contagious. Every time I visited her and her husband, Jack, I was guaranteed to leave in a better mood than when I arrived. It was impossible to keep a smile off your face in their presence. It still amazes me how up-beat and high-spirited Mary was in the face of all that was happening. She may have had ALS, but ?gosh darn it?, that was not going to stop her from painting the town and soaking up every minute of the day. Everyone always says to live each day to the fullest and to look on the bright side of life. It wasn?t until I met Mary that I fully comprehended what that meant. Mary passed away in February, but not before leaving an indelible impression on my life, one that cannot be expressed in words, but one that I know I will carry with me always. After seeing the effects of ALS on Mary, it was obvious to me that I needed to continue to help those afflicted by this disease. As a result, I was introduced to this incredible woman named Lee. Although ALS has taken her ability to vocalize, she doesn?t let that impede her ability to have a conversation. I look forward to our visits where we discuss everything from Hollywood fashion to fixing cars. My volunteer partner and I have also decided to promote awareness about this disease during our city?s annual half-marathon. It?s a remarkable feeling to be able to promote a cause among your peers, one that you truly care about and have had experience with. Such is the effect that Extra Hands for ALS has on your life."

Mary's husband Jack says: "About a year and a half into my wife?s ALS diagnoses we were introduced to Ginny and Reilly our Extra Hands students and it was love at first sight. These two girls tackled any chore with enthusiasm, no matter what. Both my wife Mary and I looked forward to their lively visits chatting away as they worked. My wife passed away a short time ago, but I know in my heart that they remain our two adopted daughters."

Congrats Ginny and Reilly!

June Volunteer of the Month - Anne Kuhlmeier

Each month we honor a volunteer who has gone the extra mile in the course of their service. For the month of June 2008 we are proud to announce the Volunteer of the Month, Anne Kuhlmeier of Boise, ID!

Anne has been a mentor in the Boise program for over four years. "I started volunteering for Extra Hands because at the time I joined I had a father-in-law that was dying of complications from Parkinson's. There wasn't much I could do for him since I lived so far away. By volunteering to Extra Hands it was a way to help other families when I couldn't help my own. Since ALS patients lose their ability to verbally communicate with their families and my expertise is in the area of augmentative communication, volunteering for Extra Hands seemed a natural fit for my interests and skills."

In addition to being the mentor for families, Anne serves on the board of Extra Hands Boise's Assistive Technology Library. She has done ALS education as a speech therapist, and she and her son Jeff made eye gaze boards for people with ALS in Idaho through the Boy Scouts.

Program Manager, Joe Harris said, "Anne has been one of our most reliable volunteers. Whether it's been making communication boards, being an integral part of creating the Boise Chapter Extra Hands Assistive Technology Library or being available for our annual Bogus Creek Dinner Auction meetings and doing the paperwork for that event, which is no small task, she's always 'Johnny on the spot'." Connie Stauts, Bogus Creek Coordinator, relies on Anne, "She's contributed to the great success of our western event because of her willingness to take on all of the data and record keeping, which is a huge job." Sarah Barsness, Extra Hands Assistant Program Manager, says, "Anne is amazing. When I look at all the things that she does for the community and people with ALS, I'm inspired."

Anne says that her favorite part of volunteering is visiting with families and getting to know new people, "... giving back is one of the most rewarding and fulfilling things to do. It really makes me happy when I've been able to help someone even if all I did was listen to them. I have also learned more about ALS and the disastrous impact it has on a person's life and his/her family."

Congrats Anne!

May Volunteer of the Month - Andrea H.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of May 2008 we are proud to announce the Volunteer of the Month, Andrea H. of St. Louis, MO!

Andrea joined Extra Hands only four months ago and has already made a major impact in the St. Louis chapter. She volunteers regularly with our founder, Jack Orchard, and has worked diligently recruiting participants for the St. Louis Run For Your Life fundraiser. Andrea visited local high schools and middle schools, encouraging students to sign up for the Run and also held numerous hat day fundraisers at her own school to support Extra Hands.

Andrea's mentor said, "Andrea really embraced this program from the moment she met Jack and gave it 150% through Race Day. Her energy and enthusiasm were felt not only at her own school but at the ones she visited as well. I think her fundraising efforts resulted in more than $1,500! She is 100% committed to Extra Hands and is already thinking ahead to next year!"

Andrea said, "The day I met Jack Orchard, I had no idea that it would change my life. It was a small meeting with people from radio stations, t.v. stations and schools, all trying to get the littlest bit of publicity out there, and let people know about the race. He sat there in his seat, presenting his ideas for Extra Hands. I was amazed, and decided to email him the next day. We talked about things I could do for my school to get the word out there, and it went from simple presentations to hat days and raffles to raise money, and eventually our own Jack Orchard Day! We had a team of kids from Clayton that came to the race. He inspired me in so many ways. I admire his drive and passion for Extra Hands. Every time I see him he teaches me something new. He always makes me laugh and smile; he's changed my life and made me a better person. He's one of the most amazing people I've ever met, and I'm so happy that I've gotten a chance to be a part of his life."

Jack said: "I've met some special people through Extra Hands, and Andrea is right up there at the top of the list. She's become an excellent advocate for ALS and Extra Hands, and has inspired legions of her fellow students and even the faculty at her school. Way to go Andrea!"

Congrats Andrea!

February Volunteer of the Month - Kaitlynne F.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of February 2008 we are proud to announce the Volunteer of the Month, Kaitlynne F. of Denver, CO!

Kaitlynne says: "I started with Extra Hands for ALS about three years ago because I needed volunteer hours for Student Government. Little did I know the two hours a week I was volunteering would change my life forever and I would adopt so many more people into my own family. I remember the first time I met my first family, they were the most kind and welcoming family I had ever met. From the second I walked in the door, I felt welcome and a strong connection among us. Volunteering for the family soon turned into more; I babysat the three youngest kids all summer which now meant I now had eight siblings instead of five. After every visit to their household, everything in my life was put into perspective. Volunteering for their family turned from a place where I logged some volunteer hours to a place I could call home. Lisa was always more worried about how everyone in my life was doing than what needed to get done at her house. She quickly became someone I loved and trusted and someone I will never forget. She would always tell me how lucky she was to have me in her life, but in all reality, I was the lucky one. Lisa changed my life and I wouldn’t be the person I am today without her love and positive outlook on life.

"Lisa had a huge impact on my life and I have decided that I want to continue to live my life more like Lisa lived hers and continue to volunteer. I am now with another Extra Hands family that I love very much. I know Lisa would have wanted me to go out and help more families and I have once again been blessed with two amazing people in my life. Even though my brother and I just started volunteering for Larry and Linda, I already feel like I have known them for ages and I am excited to see what our future together holds. Volunteering for Extra Hands for ALS has changed who I am as a person. All my problems seem so little compared to what these families (and every other family who is affected) go through on a daily basis. I truly love all the people that Extra Hands has brought into my life and I can’t imagine my life without this opportunity to help others."

Congrats Kaitlynne!

January Volunteer of the Month - Alessandra L.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of January 2008 we are proud to announce the Volunteer of the Month, Alessandra L. of San Bruno, CA!

The person with ALS she visits said: "Alesandra and Rachel are the finest young girls I've ever known. They are absolutely amazing. I like that they offer to help, which is difficult for me since I've lived alone for so long. They come every Tuesday to visit me. I have a grocery list ready for them and then they do my shopping for me. When they return with my groceries, they usually help me put the items away and then proceed to collect my trash and take all the garbage out for me-curbside. They are so helpful and always ask what they can help out with so it is much easier to accept the assistance. Alesandra put together a yard clean-up over the summer and got a team of classmates and even her teacher to clean-up my yard. They ended up with almost 50 large bags of debris and yard trimmings! Not only did they work hard all day, but the two girls collected bags on a weekly basis and dumped for me until all the bags were gone. I am so thankful for my student volunteers and this great program. I look forward to seeing the girls every week and don't know what I'd do without them. Its been a lifesaver for me"

Our Program Manager said: "Alesandra has been a wonderful asset to our Bay Area Chapter. She's very reliable, responsible, and very mature for her age! She loves to take the initiative on projects, ideas, and anything she can do to help her community out. I can always depend on her to follow-through as well as come up with creative ideas. Although she is now working, she still finds the time to volunteer with Extra Hands on a regular basis and is very committed to our mission. In fact, she's every eager to get started on "Plant the Seeds" and is already working on a game plan for her next awareness project. Thank you Alesandra!"

December Volunteer of the Month - Genny P.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of December 2007 we are proud to announce the Volunteer of the Month, Genny P. of Dallas, TX!

Genny says: "I started with Extra Hands for ALS a little over a year ago because it fit the commitment I was looking for in a volunteer job. I had no idea what ALS was or what two hours a week would come to mean to me. The Program Manager for my area, Linda Allen, walked me through all of the training and had me set up with a family. Little did I know that this “family” would become as important to me as my own. It was cold and my mum dropped me off at Ginger’s house. She stopped me as I opened my door and said, “Gen, are you sure you want to do this? We can turn around and go home?” And I replied, “Psssh?I got this. No problem.” Famous last words right? Volunteering with Ginger turned from a place where I logged some volunteer time to a place where I could be at home and relaxed. Ginger was once a stranger, but now she’s like my mom (Mac is family too. I love him!). I tell her everything (and she never seems to run out of advice). I have learned so much from her: anything from cooking, flower arranging, or about psychology and travelling the world. Ginger will try to tell you that she’s the lucky one, but she’s not. I am. I can’t imagine living my life without Ginger and Mac."

Genny's ALS family says: "Genny and I share a lot of things. Our personalities are so similar. She always has a smile on her face and she has even given me "permission" to have a big cry when we were working though some very personal and difficult tasks. We have had lots of laughs and she refers to me as her "other mom" and I have told her that I would be very proud to have a daughter like her.

"Being a volunteer for ALS is so much more than what to do with your hands. Although that's a very big part of being a volunteer, to me it is far more important when you give your heart. And Genny does that all with enthusiasm and grace. Genny is now a senior in high school and anxiously making our preparations for college. She is an excellent student and hopes for a full scholarship to the University of her choice to take the financial burden of her education from her parents.

"She has had to face some health challenges of her own, which are currently under control, this past few months but she has faced them with a very positive attitude (even consoling her mother through the diagnostic period.) she has never put herself before me or my needs even when she was not feeling her best. For her college graduation gift her mother and grandmother are taking her to Europe! She won a bad experience over having a car! I am so excited for her about her years ahead in college. Where ever Genny goes or what ever Genny does she will do it with her whole person and much gusto! She never takes a shortcut.

"If every person who is battling this monster of a disease called ALS could have a volunteer like Genny they too would be blessed by those precious two hours she gives me that truly brighten my day. It is because Genny is so loving, giving and compassionate that she deserves this honor."

November Volunteer of the Month - Dana I.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of November 2007 we are proud to announce the Volunteer of the Month, Dana I. of Boston, MA!

Dana says: "As an aspiring physician scientist at Wellesley College, I hope to bridge the gap between researchers and physicians to deliver research discoveries to patients. Upon entering Wellesley I joined a neuroscience laboratory. Although I was learning the basic science of neurodegenerative diseases, I could not find the right types of opportunities to learn how to interact with patients affected by them. Hoping to learn the ethics of care and compassion, I contacted Extra Hands. The local Program Manager, Kristi LePenven connected me to Joanne, a patient whom I have been visiting since the last summer.

"With two of my friends, Jessica and Arianne, I made Korean food and celebrated Joanne’s 60th birthday. We visited Joanne once a week to have a chat with her at Au Bon Pain while sipping coffee and sharing a piece of delicious pastry on sunny summer evenings. While exploring Joanne’s neighborhood with Joanne, I realized that even the small bumpiness of the road could make Joanne’s trip to the nearby grocery store impossible. Joanne, who loves sushi and visual art, immediately ruled out our plans to go to a sushi buffet and art museums because most public transportations and buildings do not meet her handicap accessibility needs. Nevertheless, I was inspired by her resilience. At the same time, I knew our outings and chats cheered her on.

"After spending the summer with Joanne, I was eager to share my thoughts, experience, and passion with more students at Wellesley. I gathered about 17 students who were interested in starting a chapter for Extra Hands for ALS at Wellesley. Ever since the beginning of this semester, we have held biweekly meetings and have collectively worked as four smaller committees to plan a big ALS awareness event, which is tentatively scheduled to be held in March, 2008. We hope to create an invaluable opportunity for students, patients, professors, researchers, and volunteers to come together and interact to learn from each other why we need to collectively battle against ALS.

"Thanks to Extra Hands for ALS, I am learning to become a compassionate and passionate student aspiring to be a neurologist specializing in neurodegenerative diseases. When I attended the Annual Neuroscience Meeting 2007 in San Diego earlier in November, I could not stop myself from talking to the researchers whose studies were devoted to finding genes and cures for ALS. While learning about SOD1 gene and other biomarkers linked to ALS, I realized how much I would like to spend my life conducting research on ALS and delivering my findings and hopes directly to my patients."

October Volunteer of the Month - Jennifer T.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of October 2007 we are proud to announce the Volunteer of the Month, Jennifer T. of Orange County!

Jennifer says: "My interest in the program started when I was browsing the internet for various volunteer opportunities and came across the Extra Hands for ALS website. I immediately recognized that this would be a unique volunteer position. Since high school, I have volunteered in many different capacities- being a candy-striper at Torrance Memorial Hospital during high school, a tutor for under-privileged elementary kids in college, and a member of a college first response unit. While these past experiences were enriching and reaffirmed my belief that you gain much more than you receive through volunteer work, I was looking for a different sort of volunteer position that would allow me to really get to know the people I am working with.

"After finding more about Extra Hands for ALS by browsing its website, I contacted Val Waterman, the program's regional manager. Her enthusiasm and passion for the program and its mission were infectious, and she answered my many questions with confidence. I was very excited to hear her describe the ALS family she wanted to match me with.

"The ALS family who I have been working with since March of this year is warm and kind. I especially admire their strength and courage, dealing with each new hardship with grace. Through the chores I help do, the stories we hear and share, building a personal relationship with my ALS family has been the most rewarding aspect of being an Extra Hands for ALS volunteer and has certainly added to my education.

"However, I believe that Extra Hands for ALS brings an unique, additional dimension to volunteer work as its mission also stresses advocacy and raising awareness of ALS. A few months ago I attended an ALS support group with Val, and spoke briefly in front of ALS patients and their families regarding my experiences as a volunteer in the context of the organization's mission of increasing awareness and advocacy.

"The people I met at the ALS support group were motivated, empathetic, and selfless. There was one man who continued to fight against ALS after his wife had already passed away from the disease; another man eagerly shared his knowledge and insight into Kaiser Permanente's insurance coverage so others can receive the benefits they need. Witnessing ALS patients and families share information and reach out to each other underscored the importance of education and advocacy for a community's health. I left the support group saddened but also hopeful of what could be achieved with united effort. Being a Extra Hands for ALS volunteer has truly been unique and rewarding experience."

Here's what Jennifer's ALS family said about her: :Jen has been bringing a bright smile and helping hands to our home since early Spring of this year. We can always depend on Jen to let us know when she will visit. She shows exceptional empathy, intelligence, and care in her approach to helping Carolyn with mail, business, and record keeping. Jen and Carolyn are a particularly g momood match with both having careers in medicine. They are both on the same wavelength so communication is strong without need for much explanatory effort needed by either. This is particularly important as Carolyn's voice becomes more limited. We look forward to each of Jen's visits and feel it is a rewarding learning experience for all parties."

September Volunteer of the Month - Chelsey C.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of September 2007 we are proud to announce the Volunteer of the Month, Chelsey C. of St. Louis, Missouri!

Chelsey joined Extra Hands four years ago and has volunteered regularly with 3 different ALS patients. She is very appreciated and liked by each family, and one said, "I found Chelsey to be a very personable, intelligent, and enthusiastic helper when Extra Hands for ALS answered my call for assistance with several computer activities. Chelsey was able to "hit the ground running" and was quite computer savvy so that minimal time was required in understanding what needed to be achieved with the projects. Chelsey is an excellent representative showing what caliber of people are available from your organization, and I would not hesitate to recommend it for others in need of extra hands."

This past summer, Chelsey was the St. Louis chapter intern in which she conducted research on clinics, businesses and youth groups and helped recruit volunteers throughout the St. Louis area. She also helped organize and participate in project days for ALS families with her classmates.

Chelsey has been a major advocate for ALS, talking to her classmates and others about the importance of finding a cure. She is the ALS club president at her high school and has taken great steps in getting other students to participate in the Extra Hands volunteer program. From her experiences, Chelsey has decided to study neurology and continue to raise awareness about ALS.

Recently, Chelsey won the Association of Fundraising Professionals' Outstanding Youth in Philanthropy Award for her work in the St. Louis community. This was an award she definitely deserved and we all look forward to her continued success with ALS and Extra Hands!

August Volunteer of the Month - Camas A.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of August 2007 we are proud to announce the Volunteer of the Month, Camas A. of Boise, Idaho!

Here's what Connie Stauts, a Program Manager in Boise, has to say about Camas: "Before she was sixteen, she just kept bugging us about what she could do. She sees opportunity and takes it over. Very quietly, she's not a loud, out there person." Camas helped out at the Western Event fund raiser in Boise for three years. She is an artist who loves surreal and abstract art and she created a piece, an eye with brilliant colors, for the silent auction one year. This past year she and another of her friends went around to people in their school and raised money for the event. She also helped with a family garage sale to do fund raising for eye gaze software. She and her brother took fliers all over the neighborhood and worked all day to help raise money. Another time she raised money for the Plant the Seeds Campaign before she was a full time volunteer.

She began volunteering for Extra Hands for ALS patients in 2006 and has helped out wherever she was needed, filling in for other volunteers. Here's what Joe Harris, a Boise Program Manager has to say about Camas, "She is truly an exceptional volunteer who goes above and beyond of what we expect out of our student volunteers."

In addition to helping out with ALS families, Camas has also recruited her friends to be part of Extra Hands. Connie often relied on her ability to help, "Any time we've needed volunteers, she'll find at least one person, every time. She's always a yes person. Always."

In addition to art, she loves to read and hopes to pursue the sciences in college, perhaps biology. She has also been a leader in her church group. She says, "The best part in volunteering is knowing that in some way, no matter how small, I helped make someone's life a little easier."

June Volunteer of the Month - Lindsey C.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of June 2007 we are proud to announce the Volunteer of the Month, Lindsey C. of Denver, Colorado!

Lindsey joined Extra Hands in March of 2006. After graduating from high school last June, she continued to volunteer with her ALS family through the Summer. After moving and starting college she began volunteering with another ALS family and she got her boyfriend to join her! Then she designed and created an Extra Hands for ALS bracelet for her public awareness initiative which she makes and sells to the public. You can buy her bracelet here!

Here's what Lindsey had to say about Extra Hands: "Extra Hands is an amazing program that has really changed my life through the experiences I have gained and relationships I have formed. I knew very little about ALS before meeting [the Extra Hands Program Managers] during my senior year in high school, but have since learned a great deal. The disease is horrible and the progression is devastating to both the patient and caregivers, but the people I have met are incredible and inspirational. Ruth is the second patient I have helped. Visiting every week has been something that I really look forward to. She is such a sweet and loving person who I will always remember. My involvement in Extra Hands has touched every part of my life. It has put my own life into perspective and motivated me to do as much as possible for others since I am so blessed and able. It has also guided me towards neuroscience research and a desire to spread ALS awareness. The program positively changes many students’ lives and futures, and is therefore a way to create something good out of something so destructive. Although I am thanked every week for my help, I must thank my families for letting me into their lives where I have gained so much."

And here's what Lindsey's ALS family said about her: "Lindsey is a wonderful volunteer. In fact we find her genuinely generous heart almost out of this world. In this day and age with such heavy reminders of the dangers of self centered behavior, it is a brilliant ray of sunlight to encounter someone like Lindsey. It makes me feel like maybe there is more hope for our confused world than I thought! Ruthie and I could not possible be more grateful to Lindsey!"

Congrats Lindsey!

May Volunteer of the Month - Serah O.

Each month we honor a student who has gone the extra mile in the course of their service. For the month of May 2007 we are proud to announce the Volunteer of the Month, Serah O. of Arlington, Texas!

Serah O., a biology major at the University of Texas at Arlington, had this to say about her Extra Hands experience:

"I love to help others and I always try to do what I can to help out people in need. Last year I heard about Extra Hands at a Student National Medical Association meeting and it definitely caught my attention. I was not very familiar with the ALS disease and I felt that becoming a volunteer would help me learn more about it. I LOVE volunteering with Extra Hands because it has given me the opportunity to meet so many great people. The families I visit every week are so delightful and they have taught me soooo much. They are dealing with such a horrific disease, but I have NEVER seen them without a smile. Extra Hands is an excellent program and I hope that I will be able to do more for the ALS community in the future’’

Serah's Extra Hands Mentor, Marshall, said, "Serah has become more than a volunteer to Marilyn and Joe, she has become a ray of sunshine that beams brightly upon their house each week. Every Thursday since September of last year, Serah’s presence at their home has been a consistent source of comfort and companionship for them, as well as lifting much of the burden they carry themselves. Whether it's cleaning up in the kitchen, sorting through paperwork with Marilyn, helping wash vehicles, or simply offering an ear to listen, Serah has always been there, each and every week. Not only has she been a source of consistent help to the family but she has also helped me in organizing a larger project for them by enlisting her younger sister. Serah is an excellent student, and works very hard in school, yet finds the time out of her busy schedule every Thursday, to make a few people’s lives a little less stressful and tremendously more enjoyable."

Congrats Serah!

Fighting for Family

Prachi Prayam, an Extra Hands Student Volunteer, had this to say about the program: "Every ninety minutes, one person in the world is diagnosed with Lou Gehrig's Disease (ALS) and another dies because of it. About fourteen years ago, my grandfather died of this disease. Two years ago, when I learned how he had died, I immediately devoted myself to learning more about the disease and advocating awareness. Every week, I visit Beverly, a patient with the disease. I help her with the chores that she cannot do herself. Initially I thought that there must be something about my grandfather I could learn through her; but it is so different. My grandfather never reached the stage of paralysis that I see Beverly approaching. My grandfather was told there was nothing he could do about the disease--he was definitely going to die soon. Fortunately, Beverly, like many other patients now, has the option of participating in drug tests to help further research and extend her life.

"I feel that I have been very successful in my mission of advocating awareness of ALS. Just two years ago, I knew nothing about it. Now I have researched it and spread my knowledge. I represented Extra Hands for ALS in the SHARE (Sandia National Laboratories Helps and Reaches Everyone) program. I raised money for research and participated in the annual walk-a-thon held by the ALS Association. Founding the Youth Council for ALS is the achievement closest to my heart because I can include other students in the quest for more awareness. There is a peace of mind in knowing that I am able to help others who are like my grandfather, even though I never had the opportunity to help him myself."

January Volunteer of the Month - Amy Byrd

The first Mentor to be named Volunteer of the Month, Amy not only mentored her team but has worked along side the students nearly every week at her PALS's home. There was never a concern about getting the students there or whether the family was happy with our students. Under Amy's leadership, the students always went the extra mile and lived up to their Extra Hands commitment.

Amy has a Master of Science degree in Physical Therapy and has been practicing in skilled nursing and acute care for 6 years. She and her husband enjoy Idaho by getting out and camping, hiking, snowshoeing, biking and most recently running. Amy completed her first half marathon this year. She hopes to continue running and eventually to complete a sprint triathlon and century bicycle ride.

Mentor Amy Byrd loves to travel both in and outside of the United States and feels fortunate that she and her husband have been able to see Ireland, Italy, Alaska, Oregon, and France.

In Amy's words, "I joined the Boise chapter of Extra Hands when it originated in June 2004. I have been involved as a mentor and have been assigned to 2 different families. My most recent PAL passed away in the end of November after being with her for almost 2 1/2 years. I have enjoyed getting to know my students. They amaze me with their dedication and compassion. I am proud to be a part of such a great organization that not only provides a great service but promotes awareness. The Program Managers in Boise make it easy to be a part of Extra Hands."

December Volunteer of the Month - Addie F.

"Some one very near and dear to my heart once said “I feel I have lived more in the last five years than many people do in a lifetime.” This simple assertion has remained with me throughout my entire Extra Hands experience. At first I could not understand how some one that has been given 2-5 years to live could “live” more in such a short time. Logistically, it does not make sense. As I further immersed myself in the Extra Hands community, I understood why Steven had written this and I now understand the importance of this program. It gives people, like Steven, a sense of hope and it gives the volunteers, like me, a greater sense of purpose. Life can be looked at as time, but it can also be looked at as a series of experiences. I may never know why I met Steven and Jennifer, but I know it was for a reason.

"Visiting Craig and Liann twice a month has also widened my perspective on the world. I am always asked by my parents why I agree to go over to another person’s house and clean, but yet my own room remains in shambles. I suppose it’s because I see an immediate need that I feel can be met by my own actions. I don’t necessarily focus on cleaning, but instead focus on the feeling that I get after Janelle and I leave. I’m not a scientist and don’t have a magic formula that will cure ALS, but what the Extra Hands Program does every day is a treatment in its own right.

"Thank you to the entire Extra Hands community for all that you have shown me. I will continue to BELIEVE for the rest of my life."

And Addie's ALS family said, "Addie, and her partner Janelle, came into our lives about six months ago and what a welcome addition it has been! There is a whole new level of energy when they come into our house. Addie always makes a point to ask about what is going on in our lives, is willing to do whatever we ask of her and has helped us out tremendously. Just when we think we can’t live in our dirty house for one more minute it’s Extra Hands for ALS to the rescue! At a time in our lives when there is too much to do it’s so nice to have Addie and the rest of the gang from the Extra Hands organization available to help out."

October Volunteer of the Month - Julia M.

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into [my ALS family's home] would forever change me...ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill L. lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.
Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.

Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

September Volunteers of the Month - Lauren M. and Mariam K.

Now that school is back in session, Extra Hands is proud to announce the September Volunteers of the Month, Lauren M. and Mariam K. of Colleyville, Texas. Congrats!

Mariam said: "When I started volunteering with Marilyn and Joe I knew what it was like to care for someone who is ill. I had experience due to my mom being ill. There has been lot of things my mom can’t do similar to Marilyn in this stage of her ALS. Going there every week was a delight. I loved spending time doing little things that meant so much to them. I also enjoyed just sitting and having a conversation with them and they enjoyed it too."

Lauren said: "Working with a person who has ALS is one of my proudest memories. I loved meeting Marilyn and getting to know her and Joe. Each time I went to see Marilyn I learned more about ALS. After spending time with her we knew we had to do more to bring awareness to this disease in our school and community. My friend Mariam and I remembered watching the training video at the orientation and how often they talked about doing as many things as possible to raise funds for ALS; runs, bake sales, etc. Mariam and I both decided that if others could do a run, so could we. We approached our Class Council Sponsor (Coach Walker), and our Class of 2007 with this idea of doing a 5K Race for Extra Hands for ALS! Our class thought the 5K Run was a wonderful idea and if it weren't for all of Colleyville Heritage High School Seniors and juniors, it would not have been the success it was. The sportsmanship and team work of everyone working together for this event was tremendous. It turned out to be an extremely successful event and one that I will always be proud of!"

Editor’s note: Our many thanks to our extra hands Lauren and Mariam, Coach Walker, Colleyville Class of 2007, the Colleyville community for their involvement in a truly inspirational and successful event. These exceptional students decided to plan this run and raise funds for Extra Hands for ALS in lieu of raising funds for their senior prom.

June Volunteer of the Month - Sheena C.

Extra Hands is proud to announce the June Volunteer of the Month, Sheena C. of St. Louis, Missouri!

"When I started volunteering with Extra Hands in 2002 I had no idea how much it would affect me. Over the past two years visiting [my ALS patient] became a grounding anchor; I always looked forward to seeing him and my partner each week, as they have become two of my closest friends. I've also enjoyed working with our Program Manager, Elana, whose dedication to Extra Hands is remarkable. Working with Extra Hands has truly become one of the most meaningful experiences in my life; it has shaped the direction of my future and I feel lucky to be working with such amazing people.

"Because Extra Hands is such a unique program that empowers both students and their families by giving them an opportunity to really make a difference in each others' lives, I wanted to get other students at my university involved before I graduated. I founded and co-captained a team of students who ran half- and full-marathons to raise money and awareness for Extra Hands. We really bonded as we ran to [my ALS patient's] home as a team, went door to door in the dorms to spread the word about Extra Hands and ALS, fundraised, and trained together for our race. I am very proud how well we did in the race and how much we raised, very happy to see other students become impassioned about the fight against ALS, and very excited to see it happen again (and be even better!) next year with a new captain. Extra Hands has really given me a great deal of confidence in my own ability to affect positive change in the world. I am especially thankful to [my patient], whose constant motivation and humor has inspired me to live each day meaningfully and taught me how it is possible to take any idea and make it happen with a lot of passion and hard work. I am excited to work with Extra Hands next year as I conduct clinical research at the Eleanor and Lou Gehrig ALS center Columbia University Medical School and hope I can continue to contribute to this organization in medical school and beyond."

May Volunteer of the Month - Shelina M.

Shelina M. has been with XH since March 2005. She signed-up as a student volunteer who was eager to begin working with a patient with ALS immediately, despite her already very busy schedule as a senior in college with a double major in Psychology and Sociology at Notre Dame de Namur University, various club involvements, volunteer work at two local hospitals, and a part-time job! Today, Shelina not only visits her ALS family, she is also a mentor to a few students and occasionally visits with other families. Currently, she is working on her Master's Degree in Experimental Psychology at San Jose State University and working part-time providing respite to people with developmental disabilities. Shelina enjoys her work with Extra Hands so much that she has kept her dynamic role as a student volunteer, mentor, and our volunteer intern here in the Bay Area. She's been a wonderful asset to have on our team!

The person with ALS Shelina visits, Jack S., said this about her: "Shelina started volunteering to help me about a year ago and a friendship has developed. She has helped me with a number of things including putting my photos into albums in unique, eye catching ways. She is quick to do the things I'd like to get done and do them cleverly. We share our interests and activities in a respectful and sometimes humorous way. I love music and Shelina has brought her violin to play for me. She is an intelligent, compassionate young woman who puts her caring nature into practice by helping people. Thank you Extra Hands and Marie Guiab Harvey for connecting me with Shelina M.!

Shelina said, "Extra Hands is an enriching program, not only for the families that we help but for the volunteer participants as well. May it be the stories we hear and share, the chores we help do, the new people we meet, we are changed by our involvement in the program. Ever since my participation in the program, it has left me impassioned in spreading as much information there is about ALS. In every chance I get, I do my projects and class presentations about it. I was even able to grab the interest of my Neuroscience professor and the rest of the class. This program has affected me in more ways than I could describe but one thing is for sure, I feel like I have an added mission in life."

March and April Volunteers of the Month - Ashley W. and Brittany S.

Denver is pleased announce our first volunteers of the month, Ashley W. and Brittany S.! This is what they had to say about their experience with Extra Hands for ALS…

"We have been doing Extra Hands for ALS for a few months now and the experience is very rewarding. Not only has it been a blast getting to know Carolyn, Denis, Melissa and now there son, but it feels like we are actually a part of the family. We have met most of the major relatives and a few family friends too! The community service hours are good for college and National Honor Society, but really the experience is much more rewarding in itself. Helping people with ALS has really become the reason we are involved in this and we get excited to let others know about it and encourage them to help. We joined Extra Hands because we knew the Bishops. Jennifer had been speaking to our mentor (Ashley’s mom) for some time before we actually got involved. We knew about Steven and how lucky he is to have such a slow progression and we just wanted to make other people with ALS who are not so lucky feel good and just do whatever is possible to help them out! Since joining we have been on the news, both Colorado’s WB2 and our school’s own television network BCTN. We are constantly trying to spread awareness and encourage people to join this wonderful organization. If we just ban together and BELIEVE! we can accomplish anything, and make a difference… we know we already have!"

And here's what the ALS family they visit had to say:

"The Extra Hands for ALS program has been a wonderful program for our family. Ashley, Brittany, and our Mentor Julie have very quickly become an important part of our lives. We look forward to their time with us not just for the great work they do for us, but also because their smiles, bubbly personalities, conversation, and attitudes are amazing. They always perk us up and we so enjoy hearing about their school activities and social lives. They are typical teenagers in many ways and a joy to be around; but they are probably very untypical teenagers in their commitment to us and our situation with ALS. Every week they come to our home and will do any jobs we have to do without question. They have added so much to our lives and we are very proud of their being students of the month for Extra Hands for ALS. "

February Volunteer of the Month - Jeremy C.

Extra Hands Dallas/Fort Worth is pleased to announce Jeremy C. as February Extra Hand of the month. Jeremy is a junior at Plano East Senior High School a suburb of Dallas. He is a member of several school organizations, plays the viola in the Greater Dallas Youth Orchestra, volunteers with Extra Hands and still maintains a grade point average over 4.0.

Jeremy first heard about Extra Hands for ALS at a meeting of the Teen Volunteers of Plano, a group of about 20 students that got together for the purpose of making a difference in their community. At one of their meetings the Extra Hands for ALS program was presented along with other volunteer opportunities. Jeremy and the majority of the group decided to sign up to participate in the Extra Hands program.

Jeremy first volunteered at two ALS walks as he became more familiar with the Extra Hands organization and program. When he decided he wanted to work with a family he was given the task of putting a volunteer team together for Jerry and Peggy. Jeremy rose to the challenge and within two weeks assembled his team, attended the training session and began volunteering for the family. During the process Jeremy kept everyone informed of his progress, responded promptly to all requests and did everything he was asked to do in a timely manner. Jeremy learned about another family in a neighboring community needing help so he got busy and recruited a student from that area which resulted in the family obtaining their team of extra hands.

He was not quite sure what he was getting into when he first signed up. He had never done this type of volunteer work. He just was not sure if he would be able to stick with the program. Not only has he stuck with the program, recruited his volunteer team, helped with another team but has plans to see that it grows in Plano.

“It can sometimes be hard work, but I feel its hard work done for a good cause. It always makes me happy when I hear that our efforts have been really helpful to the family. Not only this, but I'm also getting some good experiences from it. Some jobs that I do there would have never been asked of me at my home, and it's always good to know how to do the simplest things…. like raking a yard. I want to get news around the schools about Extra Hands and hopefully find more students to volunteer. I hope to keep in touch with the student that I helped to get started in Carrollton in order to keep the program growing. In addition, I plan to find younger students who will also keep the program going in Plano after I graduate.”

January Volunteer of the Month - Kyle G.

Extra Hands Boston honors the immense contributions of Kyle G., our January Extra Hands of the month. For the past year, Kyle has volunteered weekly with an ALS family. In addition to being a tremendous volunteer, Kyle has also helped recruit new volunteers for our program.

Kyle initially got involved with Extra Hands as a result of a trip he took to New Orleans several years ago which opened his eyes to how many people live with so little. He felt helpless in the face of the poverty and homelessness that he saw and when he returned home he began searching for a volunteer opportunity that would allow him to truly impact people’s lives. He eventually found Extra Hands. After becoming a volunteer, he learned that his uncle, who died on September 11, had been in the early stages of ALS. This inspired him to work even harder with his ALS family.

Kyle says of his experience with Extra Hands to date that his ALS family “has become a very important part of my life. They are two of the most wonderful people I have ever met and throughout the last year or so they have proved to be almost a second set of parents to me.” He continues by saying that “every time I work with the [family] I am so happy that I chose to work with an organization where you can have a real relationship with the people you are helping, and see and hear from them just what a difference you are making.”

Of Kyle, his ALS family says that he brightens their lives as soon as he enters the door and that they have never met such a wonderful teenager. They go on to say that “Kyle’s compassion is apparent. [He] is a young man, but mature for his years. He’s articulate and great company.” He has been able to assist them with completing projects around the house that are too much for them and is always eager to help with anything they need, including just spending quality time visiting together. His ALS family hopes that “if the saying ‘what goes around, comes around’ is true, then Kyle deservingly should secure a lifetime of benefits for all the good he does for others.”

December Volunteers of the Month - Chris L. and Brian B.

Extra Hands Boise is proud to announce the team of Chris L. and Brian B. as December volunteers of the month. Both are pre-med students at Boise State University and active in the pre-med club there. Chris and Brian have been active in the Boise program for the past year.

Chris was raised in rural Eagle, Idaho, where he was “home schooled” and helped care for his mother who has multiple sclerosis. He is an avid bicycle racer and a skier. After completing a comprehensive course in outdoor emergency medicine, Chris served on the Bogus Basin Ski Patrol. He recently interviewed for medical school in California. In addition to his involvement with Extra Hands for ALS, he goes to school, works, studies and continues to participate in his mother’s care. About his participation with Extra Hands, he says, “The program has helped me to deal with terminal illness. I have learned about courage and determination from someone who faces a challenge that will soon claim his life. This has been an invaluable experience and has greatly motivated me to become an advocate for biomedical research so one day we can treat and cure such tragic illnesses.”

Brian comes from a rural environment, even more remote than Eagle. Having lived in a primarily agricultural community, he says, “Gooding, Idaho, is a town of 214,000 residents; only 3,500 of them are people. The remaining 210,000 are cows.” He envisions himself finding a place similar to Gooding, that needs quality healthcare as well as individuals who are willing to make a difference. Brian played college basketball at Eastern Oregon University where he honed his skills of hard work and endurance. While working as a medical aid in a retirement home, he learned that “the interaction with the residents and their families was the most fulfilling component of the job.” He further stated, “I found that by showing patience, empathy and just being myself, excellent relationships and friendships would develop with each resident.” In addition to volunteering with Extra Hands for ALS, Brian works, studies, goes to school and is married to Ashley.

Both students continue to demonstrate strong commitments and compassion for our PALS. Whether it’s recruiting new students or helping with awareness/fundraising events, this volunteer team is always out front, giving their time and energy to our Boise program. Thank you, Brian and Chris, for making our first year in Boise so successful!!

November Volunteer of the Month - Ruhan N.

As we begin our fourth full year of operations we are excited to announce the Extra Hand of the Month award. Each month we will announce the student volunteer whose exemplary service most reflects our values. For the month of October we honor Ruhan N. of St. Louis. Ruhan was among the very first students ever to volunteer with us. In her fourth year she is still a weekly volunteer but also designed her own internship through which she assists our St. Louis Program Manager. Congratulations Ruhan!

"As an Extra Hands intern this past summer, I primarily helped update the St. Louis database of patients, mentors, and student volunteers, which entailed making phone calls and logging all the changes into our system. Our database here in St. Louis is now completely current, and that is crucial to moving ahead with recruitment. My internship also involved enlistment efforts for various walks and events in the area.

"Since the start of the school year, I’ve continued to work closely with our program manager, Elana Viviano, in order to coordinate the activities of our Extra Hands Club at school with the activities of the organization at large. For example, the St. Louis chapter of Extra Hands is launching its very first “Extra Hands Day” this Saturday, and our club will be reaching out to the entire school community for volunteers. Extra Hands Days are monthly Saturdays during which a group of student volunteers spends a few hours at the home of a patient completing a big project such as fall yard work, holiday decorating, spring cleaning, etc. The Extra Hands Club at my high school also holds a HUGE bake sale each year, through which we raise thousands of dollars for this cause annually."

Brett, Extra Hands Student Volunteer in Boston

I have enjoyed working with the Extra Hands program very much. Not knowing anybody who has had or dealt with the disease, I see now how important helping and volunteering with the family truly is. The family I work with is wonderful and I enjoy very much being there each week. The program and the family have showed me that even the smallest things can help, and it feels so good to be able to help such a great family in so many different ways.

Sheila, Extra Hands Student Volunteer in St. Louis

I love (the person I visit) more than anything. She is without a doubt one of the most caring, compassionate, funny, and generous people I have ever had the pleasure of meeting. I absolutely love every minute I spend with her, and look forward to our Friday visits all week...It has been really emotional for me. We have grown so close to (the person with ALS) and we watch her get worse each time we see her. It has been very upsetting, but at the same time it helps to know that we are helping her. When we go to see her she is all smiles to see us, and when we leave she is all smiles because we had such a good time. At that point we know we've helped because the time we were with her was two or three hours that she didn't have to think about being sick, or what is going to happen next. And that makes the emotions that come with it well worth it.

Gloria, School Administrator and Extra Hands Club Sponsor

Extra Hands offers students the opportunity to expand their particular community to include a person who has ALS. Apart from helping the person and, consequently, feeling useful, students realize that these people have had rich lives and still have much to contribute. They become involved in a relationship that extricates them, at least weekly, from their self-absorption. Young people need to feel that they can make a difference in their world; they soon come to understand that this difference appears not with a bang, but with a whisper: through the work they can do to improve the quality of a single person's life. Paradoxically, they discover their own lives enhanced and the world enriched. As they learn about the person they visit, they learn more about themselves.