My Nonprofit Reviews

As one of the original members of NUCDF back more than 20 years ago, I can hardly believe the organization that it has become. From a tiny grassroots organization with a handful of families that could barely make it through the day because their children were so sick, never mind run an organization - NUCDF has become a thriving, educational, research organization of the highest caliber. The quality of care that it gives to afflicted families is bar none and I fully attribute this to its director Cindy Le Mons. Her passion and commitment is unequaled at all levels as exemplified in the hours spent helping family members get the help they need, to her intelligence, diplomacy, and executive business skills. I do not believe that any one individual knows as much as she does about this disease. This leadership has attracted the highest caliber medical professionals. The results speak for themselves. The treatment options available today, are sophisticated and successful to the point that one could say that the survival rate of a child diagnosed with this disease would have almost 100% survival rate. As a family, we know that if we are ever in trouble, any where in the world, that Cindy will answer the phone day or night and get us in touch with the medical professional or treatment we need. We know that the organization is strong and well supported financially, professionally and the interaction between families and the professionals is solid and consistent. This has resulted in new research design, discovery and growth far beyond our tiny numbers.

I am writing about our daughter's experience with Partners for Progress. She has been riding there for a little over a year. Because she was deathly afraid of horses, we simply never considered Hippotherapy. But then a friend of hers from her Special Needs Cheer leading Team - Ultimate Athletics of Wauconda - kept encouraging us to - at least - come to watch. Well I was so impressed at what her two 9 year old disabled friends had been able to accomplish (kneeling on the horse with arms outstretched while the horse was trotting) that I thought it would not hurt to give it a try. The first day, we were sure that she would be eliminated from the program. She was 44 years old and has been thrown out of every public program because of her behaviors. As soon as she heard the word "helmet" and that she would have to wear, one she started screaming, jumping up and down and running all around the room. One of the owners, who is also an occupational therapist, Mandy, simply came over said "Put on your helmet" and our daughter put on the helmet, followed her into the barn, walked out into the arena and began brushing the horse! To say we were astounded is to put it mildly. Mandy assured us that screaming is normal and that because of her balance issues that it would be normal for her to have such a fear of falling and a special fear of falling off of a horse. Mandy's no nonsense, totally pragmatic, of-course-she-can-do-it attitude made all the difference. Her ACCEPTANCE of Sarah and her total belief in the ability for her to work through her issues was life changing. In the beginning she screamed the whole time she was on the horse and especially when the horse stopped, started or turned a corner. One year later she rides the horse as if she is sitting on a couch, stands in the stirrups, posts, rides while holding her arms in front of her, behind her etc. Rides while throwing balls into baskets. Rides outside up and down hills etc. She begs to go horseback riding so we have increased it to twice a week. There isn't a peep out of her with the exception when she is placed on the horse and that lasts for seconds. This is an incredible organization in every way. We have witnessed their work with children from the age of 2 to veterans in their 60's and most of all we have seen the results. We have been part of their fundraisers for 2 years. These are the most professionally run fundraisers that I have ever been to. Everything that they do is the best quality from the quality of their horses to their commitment to their clients. THANK YOU PFP - The Parsons Family

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