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JoAnnHaase

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1 reviews

Review for Muscular Dystrophy Association, Tucson, AZ, USA

Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

It's difficult to know how recent changes within the orginazation will affect the effeciency of the operation as a whole. I think it's important to improve numbers on charity ratings systems. The puplic seems to have a general distrust of charties in general and like most business was negatively impacted by the down turn in the economy. To me specifically I would like to see greater awareness that donations made directly to the MDA can be used to fund research on specific disorders, camp,etc.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Role:  Volunteer