CMT: A TITLE, A LIFESTYLE
Having CMT was not just a diagnosis for my but also for my kids, who also carry this diagnosis. We had to learn how to not only wear a title that no one knew about but to also live a life style that would change our lives forever. We could have given up and allowed circumstances to defeat us but our local MDA office and personnel came to our rescue. This is when we knew that their giving to us could only mean that our giving to others would result in a circle of love and support that could only produce healing and cure! Thus, our giving became our motivation to live, not just for ourselves but for others. Finding a place to learn more and grow with others like ourselves from the Hereditary Neuropathy Foundation was a heaven send. Having teens that do not accept a chronic illness decide to embrace a movement to help other like themselves and accept what can not be changed is a miracle by itself. Now we have a Giving story to tell and share with our friend and neighbors. Our giving cultivates a desire to go on and see what the end will bring, if not for us then maybe for someone else.
Review from #MyGivingStory
I was a little disheartened to see some of the negative reviews about the MDA but knowing how big this charity is and how many people it services I understand that not everyone will have the same experience. I personally have had a great experience with the MDA. I was diagnosed with Charcot Marie Tooth disease in 2003 when I was 16 at an MDA clinic in Chicago. But I really got involved with them in 2010 when my then 3 year old son was diagnosed with CMT also. That experience of watching my son struggle to walk and to reach is milestones was the hardest thing I've ever had to go through, and if it weren't for the MDA being there pretty much every step of the way I don't know how I would have gotten through it. I only have experience with local and regional employees of the MDA so I can't comment on anyone else at the organization, but the people I have met have all been caring, compassionate, and helpful. I have done many fundraising events with them, gone to parties, and my son goes to camp every year. I have also tried being involved in another charity for the disease I have and did not have a good experience, they are no where near the MDA. I think some people got upset when some services got cut a few years ago, while I understand the frustration I don't understand the hostility. The MDA still provides so many people with so many services and opportunities to see people turn their back on them in an instant makes me sad. Where would any of us with a neuromuscular disease covered by the MDA be without them? What other charity would be helping you out as much as this one?
The management and promotion of MDA is too top heavy in administrative and fundraising costs and has implemented changes too drastically over the past four years, abandoning it's long time base in the hope of becoming more appealing to the Facebook and Twitter market. Turning a philanthropic icon like Jerry Lewis into a villain and putting him out to pasture betrayed the mission of MDA to give the disabled dignity and opportunity. Public trust has been lost. The lack of transitional planning has reduced income and increased expenses and many local branches are failing. Finally, MDA does not address the charges of exploitation brought by Jerry's orphans.
I am not quite sure why only the Sharmock program is listed, but notice none of the previous reviews are specific to it. I wasn't sure if I should list myself as a volunteer or client served, as I am both of these! After several years of searching for answers to my medical issues, I was finally directed to the MDA Clinic at Northwestern University in Chicago. My daughter and I were both diagnosed with Charcot-Marie-Tooth disease on our intial visit. I made a decision at that time (2003) to also have DNA testing done to save any other members of my family the painful extensive process I went through. At that point in time the MDA covered the cost of the testing. My daughter and I continue to this day attending this clinic every 6 to 12 months. In 2007, my daughter gave birth to my first grandchild, Hunter. It became apparent by the time he was 2 1/2 that Hunter was exhibiting symptoms of CMT. An appointment was made at the pediatric clinic at Rush University and getting a specific diagnosis of a child of this age with a painful ncv/emg was not an option. At this point in time the MDA was no longer absorbing the fee for the DNA testing and his insurance didn't cover it either. We felt at an impass. Then something rather amazing happened. The pediatric neurologist contacted our MDA health care co-ordinator and received approval for the payment within 20 minutes. Each clinic has some discretion with their MDA grant money and our family is forever greatful!
I have to be honest and say that, prior to Hunter's diagnosis, the thought of volunteering had never even entered my mind. My knowledge consisted only of the telethons that interupted the Cubs games on Labor Day weekend! I also felt powerless over his illness, it affected me much more than my own and my daughter's, who was older (16) when she was diagnosed and had very little symptems at that point in time. The first program we became involved with was Shamrocks for Dystrophy. I voiced my concern about not wanting Hunter paraded around for sympathy to raise money, turns out Hunter is quite a natural entertainer and really enjoys doing it. I beleive the next project was the Summer Camp Medallions. We worked with Hunter's school to participate in the Hop-a-Thon and with our local fire department to bring the Fill-the Boot program to the town we live in. The last 3 years we have fielded Team Hunter's Heroes in the MDA Chicago Muscle Walk. All 3 of us have been part of clinical research currently being funded by the MDA as well. Two years ago Hunter was finally old enough to go to MDA Camp. It was kind of a difficult decision to let him attend at such a young age and when he got there he refused to get out of the car! When camp was over, he didn't want to leave! He has made a wonderful friend in his camp "buddy" Nicole, who continues to maintain a relationship with Hunter. She has taken him to the zoo and bowling and just to hang out. I take exception to a previous comment regarding the summer camp program simply being a photo opportunity. Hunter had his 2nd trip to camp recently and it's very clear to me that this program has and will continue to make a lasting positive effect upon him. He also understands the concept that the events he participates in help pay for him and other kids like him to have a camp experience. Many of these children would never be able to attend any other camp due to their special needs, to me that's pretty relevant!
I/we (https://www.facebook.com/HuntersQuesttocureCMT) as Hunter's Heroes, choose to fundraise because sitting by and doing nothing to help find a treatment/cure for Hunter is not an option. We have worked with CMT specific charities in the past and made a decision to work solely with the MDA because of the benefits we reviece directly and indirectly from them. They currently fund more CMT specific research (and the list of projects is readily accessable) than any charity, provide team approach clinics at no fee, have excellent local support teams (who know us by name) and much more.
I have participated with MDA's Locked Up program consistently over the past 5 years or so. The fundraising coaches are very helpful and have great ideas on how to help me reach goals and really make a difference. This was the first charity I have worked with and I was very new to fundraising but I feel like an old pro now. I really like how their support goes to local families in my area as well as to national research. We had the opportunity to meet some of the children with MD at the last Lock Up event it was really rewarding to be able to help. Please participate if you havent before. Great cause!!!
Our grandson has Duchennes M.D. and we became involved with local fundraising and local telethon and after chairing some of these events and seeing how money was spent on staff and gifts and then not being able to get any accounting I was done! The funds available to our grandson were minimal. The big push were the camps and that for the purpose of showing pictures to raise more money! I would never give a nickel to this group.
As a former Executive Director I can verify that his organization spends millions on various fundraising events including its annual Telethon/Show of Strength while struggling to bring in funds to provide much needed services to its patient families. The organization recently closed down numerous ALS, Pediatric and Adult clinics nationwide citing an increase in cost yet the clinics are funded by numerous grants and only cost the organization $20 -$30,000 per year to operate while serving hundreds of thousands of patients nationwide. Additionally the organization claims it spends $800 per child to send them to an MDA run summer camp but costs are rarely over $400 per child. MDA also spends under $120 million per year on research while bringing in close to $800 million annually in funds raised by its offices nationwide. Where is the additional money being spent and why are clinics and healthcare services being cut if their revenue stream far exceeds the expenses of running their healthcare programs and services?
Review from Guidestar
My family has four generations of Becker's Muscular Dystrophy. It is the same basic disease that the wheelchair kids that you see on the telethon have, except it is non-fatal, and only affects the large muscle groups. We are blessed that it doesn't affect the mind. David is in all honors classes, robotics club and a straight A student. The women in my family carry the gene, and their sons have a chance of the disease. My oldest son was diagnosed with it in 2005. From the moment that we had an official diagnosis, the MDA has been there to help. My son, David, goes to the neurology clinic twice a year and we do not pay anything for the visits. They provided David with his first wheelchair, custom made specifically for MD kids. When he outgrew it we discovered that the lack of funding had ended the program of providing wheelchairs, but that they had a collection of wheelchairs in their "loaner closet". We donated his old one, and now he is using a chair that they provide. We have been invited to summer camp every year, but always had conflicts until this year. They have a great support community, and every person I have spoken to at the organization has bent over backwards to help our family.
My uncle, and my grand uncle have both participated in various clinical trials over the years in efforts to find a cure, or a medicine that will work to alleviate symptoms. When they were diagnosed, kids with Duchenne MD(the fatal version), only lived to be 17-20. Now they are living into their 40's. That is what this charity has done. Those trials and the science behind them were organized and paid for with funds from the MDA as well as a government grant. This year there are two possible CURES in human testing. The medical expenses, wheelchair and camp are great, but the real reason I am a staunch believer in the MDA is because they are working to find a cure, and it looks like it is finally happening. That is why I support the MDA. They are so close to finding an actual cure!
Review from CharityNavigator
I spent many years working for MDA and feel a need to address all the comments to paint a picture. The field staff does great working raising funds that stay local to support local programs. The goals set by National can be unrealistic and the approach to programs causes staff to burn out - too many events instead of building on the successful ones. The National staff is a bit dysfunctional and it is ironic since most of the current leadership came from the field. The income is declining which does not justify the high salaries they are paid and the money they waste. They recently cut nearly 30 staff members with a portion of those members being some of their longest tenured employees with an insulting severance. This organization has a good local presence but on a National level, can use some retooling and some lessons about loyalty.
Thank You MDA! What About The MDA Sometimes to understand the functions, Of an organization like MDA... We need to hear from people they've helped. I have a poem with something to say. Six months after I married my bride, I was diagnosed with Muscular Dystrophy. I turned to the MDA for help. This is what they did for me. They gave me the information I needed... To make choices concerning my health. The helped me pay for needed equipment. I'm not a man of wealth. They gave me the peace of knowing I'm helping. I'm allowed to take part & volunteer. I share my ideas as well as my poems. In my heart they are very dear. The MDA does so much more. They offer people peace and hope. Without the help of MDA. It'd be much tougher to try and cope. Thank You for serving your community with integrity and for your time. . Trust GOD and Never lose your dreams. Perfect Peace! Thank You Very Much! Robert. A. Mingo (Humanitarian Poet) I was born Robert. A. Mingo in Minneapolis Minnesota to my parents Donald and Barbara in October of 1961. I don’t know much about my father as he left when I was four and never saw him again until I was 19 at a family reunion. My mother was raising six children by herself Three sisters and two older brothers, I was the fifth of six. It seems I was born to struggle, My earliest medical history is pages and pages of heart related medical issues. I don’t remember any of it but spent a couple days reading through page after page of medical documents. Sometimes I would stay awake for days at a time and the doctors would give me injections to make me sleep. They never knew why I struggled to breathe and passed out so many times between the ages of 1-3 years old. I was told my heart stopped so long once that I had to learn how to walk and talk all over again at two and a half years old. My mother said no to open heart surgery or message should they not be able to get me breathing again. I started kindergarten a month before my fifth birthday and struggled for C’s And D’s all through school except my senior I got a few A’s every quarter which was due to the difference between public and private school back then. When I was growing up I could run, jump, ski, swim into my late twenties despite my severe scoliosis. I always had to do things a little differently to perform the same tasks. I could not throw a frisbee more than a couple feet like normal people no matter how hard I tried so I learned to use my wrist to throw and was an excellent thrower. At thirteen I started having trouble combing my hair. And brushing my teeth, my knees, back, arms and shoulders started aching a lot. The doctors always had an answer as to why I had these issues and mother did not have a lot of patience for dealing with me so I pretty much kept my mouth shut and went with the program. I grew up a troubled youth struggling physically and mentally to fit in any where I could find acceptance. Some how I managed to graduate from High School in 1980 after spending three of those years at De LA Salle High School and working afterwards cleaning the building to pay my way. This really helped to set my spiritual compass for the life Journey ahead of me. At age nineteen I sustained a severe knee injury while playing football which required multiple surgeries and it did not respond well to physical therapy though I worked extremely hard at it for a year. I was never the same after that. I started working in the animal field and it quickly became a passion but a sustained another debilitating knee injury so I went to veterinary technician school. It seemed I was really at peace when helping people and their pets. I started working at a Hospital in Brooklyn Center Minnesota and was very proud to be there. I began to feed my hunger for knowledge by reading all the medical books in Dr Dudley’s office as well as ever encyclopedia I could find. I also discovered my gift of poetry while working There. I learned a lot while there both of the heart and mind. Soon I could not lift the animals on the tables anymore but blamed myself. I thought I was lazy and sluggish and that because of that I was weak. It was actually the other way around, because I was so weak I became lazy and sluggish. Man did those ten years fly by! The pains got worse and my ankles swelled often but I ignored all this in the midst of my new 4 day work weeks and three day northern Minnesota fishing adventures. I stayed busy by studying the Bible for 5 years as I worked my way into a managers position by working the over nights shifts. I was during that time I met my Bride and Joy in the year 2000, What a beautiful way to start a millennium! We married in September of 2001 and had six beautiful months and then I seemed to just fall apart concerning my health. I was diagnosed with FSH Muscular Dystrophy in March of 2002, lost my job and went bankrupt and wanted to die, but that is not the end of the story. After a year of depression I attended an MDA informational workshop and after hearing a man speak about his situation I was inspirired and enrolled in Acts International Bible Collage and went back to school for my degree in ministry. In 2003 I wound up in the ICU fighting for my life and came very close to having a respirator and trachea put in but in but by a miracle of GOD I’m still very active and breathing free. I now use a power wheelchair full time. I’m a writer and author of Poetry For The Soul Volume one. I’m very active with the local MDA and volunteer at many lock ups as well as attend the balls and fund-raisers. My Goal in life is to leave this world a better place than when I entered. A special thanks To Amy my Bride, My Siblings and My MDA Family for loving me even when I didn’t want to be loved.
Review from Guidestar