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?
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.
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
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