It's only been a week since we had our diagnosis of CPS deficiency one of the urea cycle disorders that are rare and hard to diagnose. In that time we could help connecting with a physician who specializes in the treatment received encouragement from the national director of the organization and found a Facebook group where we could get more support. I can't say enough good things about this nonprofit except to say that they are worthy of many kudos and donations!
The NUCDF has greatly helped my family!
My daughter's life saving amino acid was denied coverage by my new jobs' insurance, Blue Cross Blue Shield of Alabama. I always struggled to get her Medicaid disability insurance to cover it also. Further, the manufacturers of it, as prescribed by the IU RILEY Hospital, have several times stopped making it, forcing us to scramble by finding small qtys in stock at various distributors or compounding pharmacies. Several times, we had to buy non pure kinds of it from GNC, even though the doctor said she would have to take huge amounts that way.
NUCDF told me of several sources of the amino acid, L-Arginine. These were pure, and reasonably priced also! So my cost went from over a thousand dollars for 3 months worth to less than a hundred dollars! Plus her health is better than ever!
So please consider donating to NUCDF, I certainly am!
While I am not an individual with OTC my wife has had this disorder since she was born. As I am sure you can imagine I knew little of the disorder. I sought out information so I could be conscious about what to expect and what do in case of crisis. The information that the NUCDF provided me was invaluable. I can’t say enough how the NUCDF and its members/families have been so supportive throughout the years. This is a great resource for families!
I'm one of the oldest individuals with a UCD that was diagnosed within the first few years of my life. For most of my life, I didn't know others like me. Then in my 20s, my health took a turn for the worse. My family reached out to the NUCDF and they were there with education and support. Eventually my health improved and today I am living a happy and full life. I've had the opportunity to attend some of the family conferences and chat online with others like me. It has been a blessing to know I'm not alone. This organization is more than a community of people, it's a family. They work with doctors, patients, and lawmakers to advocate for patients. They have helped contribute to medical advances for patients and funds to help those in need.
NUCDF is not your regular organization that helps families .It's core of their mission-vision is family centred. I have a daughter who was afflicted with OTC and for the last 11 years or so and in those years when I need more than the usual help to make a sound decision, NUCDF was always in our midst. Time and geographical location does not come into play even as they were always there when I was in dire need of help. And with my daughter it was always the odd times when she got into crisis . Cindy Le Mons was always there to help . In my opinion she has done so much to the NUCDF family as she treats everyone as her own. Her wealth of resources both info and people have really helped us all. In my family's 11 years of this disorder, I am so happy to inform that my daughter is happy as a "regular" 14 year old 4.5 months post liver transplant. But all this because NUCDF have been there for my family through our ups and downs, laughter's and tears. Thank You Cindy and to all the Doctors and families without all those conferences we won't be as empowered as we are today. We learn so much from you guys...thank you.
Our families experience of NUCDF has been as close to a miracle as we've ever seen. The information and level of support that we have received has been nothing short of outstanding! We have called many times from overseas,desperately looking for advice and clarification of what to do in our child's best interest. Sarah was diagnosed with neonatal CPS1. Through times of intense suffering and despair, crucial information, advice and support was offered to us from NUCDF, in receiving this kind of help we gained a broader understanding of the illness itself and became more assertive in how to try and keep our child as safe as possible. We were also pointed in the right direction to access useful videos and resources. We made the hardest decision of our lives that our child would receive a liver transplant. We are pleased to say that things went well. It has been a life changing experience for our family. We are 100% sure that if it wasn't for the hard work, kindness and selfless dedication of those working at NUCDF, we would not be where we are today. This organisation is worth it's weight in gold!!!! I would recommend them time and time again to any family struggling with a UCD. This organisation gave us hope when hope had gone. It empowered our family to make the best decisions for our daughter! The information NUCDF provided to us was priceless! We are still in contact with them and we sincerely hope that they get the well deserved recognition for what they do and the number of families they reach out to in some way and touch their lives. We know for sure that NUCDF saves people's lives! What could be greater than this? To say how grateful we are, words are not enough!!!
My son Finn was diagnosed with neonatal onset ASA when he was 5 days old. Months later I found the NUCDF through a Facebook Support group. The NUCDF has provided me and family so much knowledge and support. I wish I had found them earlier!
This foundation is so amazing. They held the national conference in Ohio and we attended. This conference literally changed our lives. We learned so much from the doctors, NUCDF staff as well as other parents. Because of this conference it led us to make some huge decisions for our son.
Cynthia LeMons, Is an amazing woman. She has spent hours with me discussing my son and his needs. Talking on the phone with me multiple times and listening to my concerns. She is very knowledgable and so helpful. I am so thankful to have her support then and even now.
I owe so much to Cynthia and the NUCDF. :-)
Nucdf has been such a lifesaver for my family. The knowledge the staff has about OTC and the day to day issues that arise is not only impressive, it makes a real difference in our lives. Cindy has always gone above and beyond to share studies, medication and updated information to us...and in times of real despair, she was the light that gave me hope of being a mother again. Words can not explain how truly amazing she is and how thankful I am to have this family that can relate to what we have experienced.
Not only is the NUCDF an outstanding resource for so many of us but a wonderful support network. They've always been there to answer any of our questions or concerns, put any of our fears to rest, be our champion and advocate and so much more!!! Thank you NUCDF!!!
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.