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June 4, 2011

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June 4, 2011

My daughter has OTC...I suspected it when she was about 7 months of age when I started introducing solid foods to her and she was becoming failure to thrive. I have lost 2 sons to OTC so was very aware of the danger that could lie ahead of us. The thought of having to bury another child was heartbreaking. I was having a hard time finding a Dr who could help me with "Elle". After searching the internet I came across the NUCDF. I was amazed at all the information they had on UCD's. I filled out a contact information on their website and Im not kidding..it wasnt 5 minutes later I received a phone call from Cindy Le Mons...what an Angel!!! She gave me so much information and then came the most awesome question from her.."Are you happy with your Dr"..I replied NO. She then directed me to a Dr. who has been a Godsend! My daughte did a complete turnaround...he and his dietician helped us get Elle stable. I later started displaying symptoms of adult onset OTC, called Cindy about it and she encouraged me to get started on medication too. I feel so much better too. I can call her anytime and she is always there for us. She lets us know all the important information that we need to know concerning our meds, recalls, drug interactions...anything to do with our illness she is there...for the NUCDF is all about finding a cure and keeping us alive..that is their goal! Cindy really loves us all and wants to help us..we can always count of her. She has given us the best Dr. who gives us his 100% to us as does she. I believe in my heart we would not be alive today if it wasnt for Cindy Le Mons. We love you!

The Great!

I've personally experienced the results of this organization in...

Myself and my daughter.

Ways to make it better...

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

NOTHING

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Interent

What, if any, change in your life has this group encouraged?

That we can live with a UCD

When was your last experience with this nonprofit?

2011

March 18, 2011

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March 18, 2011

My son was in a coma at the age of 8 due to hyperammonia. We had no idea what was happening -- we were fortunate to have a Pediatric Neurologist recall from his early days of medical school training that it was not Meningitis or Reye's Syndrome. He suspected it was a Urea Cycle Disorder. Via Ammonul and 2 rounds of blood dialysis -- his life was spared -- and eventually he awoke from the coma. It was after we received our first shipment of Cyclinex-2 that we found out of the NUCDF and its annual family conference. We attended the San Diego NUDCF and were so thrilled to meet Cindy LeMons! She is a dynamo and so helpful to all families.

The Great!

I've personally experienced the results of this organization in...

attending the annual NUCDF conference.

Ways to make it better...

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

Help with more funding.

April 29, 2010

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April 29, 2010

My daughter, Margaret, aka Doodle Bug, was born February 6,2003 as a normal delivery. On her first birthday our world began to change. We spent the next 3 months in and out of the hospital. May 5, 2004 Maggie was diagnosed with ASA by Dr. Darius Adams @ the Albany Medical Children's Hospital in Albany, NY. We learned about NUCDF from Albany Med. Cindi LeMons was my first contact. She was kind, reassuring, answered my questions and many emails. Cindi suggested I speak with Jaime, a parent, with an ASA child. Jaime and I have been in touch via phone calls and emails even today. I have attended 4 conferences since the diagnosis. Only once did I go without my family. NUCDF is all about the family and making sure everyone is included. I have written articles for the newsletter, hosted fund raising events thru Pampered Chef and Lia Sophia and help at conference whereever needed. Last year I did a powerpoint presentation at Maimonides Medical Center in Brooklyn, NY with Mark Korson, MD. Cindi, Tresa, the Lebays and other families are wonderful. We feel they are part of our extended family. I have emailed with families in Europe when they needed help and support. I have NUCDF listed as a beneficary on one of my life insurance policies so that I know someone will always be there looking out for Maggie. NUCDF is a wonderful, caring organization that has helped so many and with more funding the possibilites are endless.

The Great!

I've personally experienced the results of this organization in...

many ways. Last year, 2009, we received some unsettling test results and Cindi reviewed and helped me get answers. She has a very calming and understanding effect on peolpe.

Ways to make it better...

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

suggest a Northeast branch. There are many families in the NY, MA, CT, ME areas.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Conference and the positive attitude everyone shares. The kids are the first and most important.

The kinds of staff and volunteers that I met were...

are always wonderful.

If this organization had 10 million bucks, it could...

do more amazing things.

Ways to make it better...

I lived in CA vs across the country in NY so I could help out more.

In my opinion, the biggest challenges facing this organization are...

funding.

One thing I'd also say is that...

NUCDF is there for anyone with a urea cycle disorder.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 18, 2010

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March 18, 2010

My son, Croy, was born with a urea cycle disorder, OTC Deficiency. We didn't know about this until Feb. of 1999 where he was diagnosed by an amazing metabolic specialist in Atlanta. Once we knew what we were dealing with, we were told to contact the NUCDF.org and we immediately felt the love and help from Cindy LeMons, the executive director. Anytime we have a question, a need, a thought, Cindy is there for us! We attending the 2004 conference in San Diego and our family had a wonderful time. We learned more about this disease, had the opportunity to meet with many doctors and talk with families dealing with the same issues that we were dealing with. My son was doing so well. He was on a low protien, high calorie diet; he was checked quarterly by our amazing doctor, Dr. Kendall and he was only hospitalized 5 times in 9 years. In the summer of 2008, Croy got sick and was taken to Egleston Hospital. He was put on dialysis and was getting well. But on the 9th day, a pharmaceutical error took my son's life. Once again, the NUCDF was there for us. Cindy put us in touch with great doctors during the ordeal and now that we are going thorugh mediation with the hospital, she has been a huge help in making sure that we have the information we need so that this error will never happen again. The NUCDF is like a family to us and we love and appreciate them more than we can ever express.

Photos

The Great!

I've personally experienced the results of this organization in...

working w/ my son

Ways to make it better...

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

do nothing

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

cindy

The kinds of staff and volunteers that I met were...

kind

If this organization had 10 million bucks, it could...

save lives

Ways to make it better...

couldn't have been better

In my opinion, the biggest challenges facing this organization are...

funding

One thing I'd also say is that...

nucdf is wonderful

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 12, 2010

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March 12, 2010

My son was born with a very rare disorder. I learned about NUCDF before his first birthday. NUCDF provided a wealth of information, valuable resources and contacts within the UCD community. The first (of many) conference we attended was like coming home to a group of long lost friends. The immediate friendship and support we felt was invaluable. That was over 14 years ago, and that friendship and support continues today. I believe NUCDF is a leading support organization that saves lives, advocates for important changes in the medical community, and offers families dealing with a frustrating and scary disease information, support and a ray of sunshine and hope. Through their tireless work more babies are screened at birth for dozens of treatable disorders, medical staff receive life-saving training, new treatments and therapies are pursued and developed, families are put in touch with leaders in the medical community and each other.

The Great!

I've personally experienced the results of this organization in...

receiving support from other families dealing with similar diagnosis. Also much information about the medical specifics of this disease and been put in touch with medical experts in the field.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Meeting other families that are dealing with the same diseases.

The kinds of staff and volunteers that I met were...

Knowledgeable!! Their is no one more informed on the subject of Urea Cycle Disorders than Cindy LeMons. She is a tireless advocate that saves lives and improves futures!

If this organization had 10 million bucks, it could...

fund lifesaving research into a treatment and cure for UCDs. Also, it could provide much needed education and training to the front lines of the medical community that treat these patients.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

March 11, 2010

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March 11, 2010

As the former VP of Clinical Operations for a small biotech, I was introduced to the NUCDF in affiliation with my company's UCD research program. Cindy LeMons, as well as several members of the UCD Consortium provided critical input and expert advice to aid in designing feasible studies for this rare and very special patient population. Earlier this year, I stepped down from my executive position in order to devote more time to my personal endeavors including helping non-profits with high impact potential, like the NUCDF. When I attended my first NUCDF Family Conference in June 2008, I not only learned all the ways the NUCDF has supported UCD patients and their families through research, awareness and education, but I had the rare experience of meeting and listening to the testimonies of dozens of UCD patients, their families and the physicians and nurses who treat them. In my 25 yrs of working in clinical research, I had never witnessed such a collaborative and meaningful exchange of data and information with the sole purpose of finding a cure for UCD. That meeting as well as those before and after were made possible by the NUCDF, as well as the testimonies of how the long, loving arms of this special organization has and continues to reach out to the countless children and adults throughout the country who are affected by UCD. I am privileged and honored to be an active donor and volunteer for the NUCDF.

The Great!

I've personally experienced the results of this organization in...

hearing direct feedback from UCD patients and their families who have received, in many cases, life-saving information and support.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The determination and drive to find a cure for UCD and actively provide support to these patients and their families until such time that a cure is found.

The kinds of staff and volunteers that I met were...

the dedicated Executive Director (Cindy LeMons) and some of the board members.

If this organization had 10 million bucks, it could...

enable more targeted UCD research and save more lives by expanding their current reach.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009

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