Testimonials

Dear colleagues and friends members of the Editorial Board of your outstanding journal ULF News from United Leukodystrophy Foundation, which I receive regularly so many years, once again congratulation for the high level of quality of published articles and other interesting texts. Also many of my co-workers are reading it with a high attention. With real gratefulness,Yours Milivoj

I never wrote to tell your foundation how grateful our family was for the second opinion program. Within two weeks of your receipt of Eliza’s medical records, we were given a diagnosis. All of the doctors that we had seen in the Orlando area just had never seen anything like it. We had been on a waiting list to go to Kennedy Krieger but couldn’t get in until January 2009. We were so thankful that there are doctors who specialize in this area and can just look at records/MRIs and quickly identify what others can’t. The opinion we received from the committee was so thorough in explaining the issues. We took the opinion to our doctor who happily concurred. He was also impressed with the program and has said that he will refer other patients as necessary to the program. Luckily he doesn’t come across cases like this often. We are so fortunate to have received a non progressive diagnosis and stop the continual medical testing of our daughter. We will continue to maintain our membership throughout the years because of the great work you do and we hope that doctors are able to find treatments and eventually eliminate leukodystropies. There truly aren’t words that can express our gratitude that there are organizations out there like yours that help people. Amanda

May your good work continue to provide support and hope for families experiencing the challenges of this affliction. Joanne

The recent Alexander meeting was just lovely and awe inspiring! What a wonderful meeting. It not only was stimulating scientifically, but it was so great to see so many of the families. I have always told everyone that I believe the ULF is a most wonderful organization! Dr. Anne

I want to thank you for the wonderful dinner (s) and room you provided my family and I with. We met so many great people. Russ

I wanted to thank all of you for the tremendous effort that went into the Alexander meeting this weekend. Dr. Albee

Thank you for a GREAT meeting! You guys did a wonderful job. It was comforting to be with others. Donna

I wanted to thank all of you for such a wonderful and emotional experience. It was a pleasure meeting you. Jackie

I just want to give a BIG THANK YOU. It was so nice to be surrounded by other families facing Alexander’s Disease. It felt like a big family reunion. The ULF does a marvelous job at organizing these meetings. Carin

Just a note to touch base and let you know how much I appreciated the chance to meet each of you and share information. Debbie

We felt the meeting was a resounding success, and we appreciate the obvious effort, planning and work which went into it. Natalie

I wanted to thank your organization for hosting such a wonderful conference. It was truly amazing to meet the doctors and hear them speak. Obviously their actions throughout their respective careers and each day have created for these families and patients the “teaspoon” of hope that makes such a difference….. Ellen

I wanted to thank you for everything that you do. Being at the confernce made a huge impact on my life. I learned a lot and faced realities that I had been putting off and I found the best group of people.

Thank you for your efforts in both support of research and families affected by leukodystrophy. I have gained much strenght from the ULF and found attending the ULF conference to be a life changing experience. Lynne & Phil

The family has always appreciated teh support and comfort provided by the ULF. Keith & Martha

Thank you for the presentation on Megalencephalic Leukodystrophy with subcortical cysts (MLC) it was very exciting. Jacquelyn

Thank you for the Cerebrotendinous Xanthomatosis (CTX) presentation it was very informative. Raymond & Darlene

Thank you for the support your foundation has given to families with loved ones who suffer from leukodystrophy. The Board of Deacons; East Main Presbyterian Church

Thank you for the work you are doing on behalf of the families devasted by this horrible disease.  Paula, Toni & Joe

Words can not express the comfort you bring to all the families living with leukodystrophy! God Bless You! Stanley & Louise

I have received the information sent from you; it is very useful to me thanks a lot! Li

Thanks so very much for all your hard work and long hours in making the ULF conference possible.  Margo

Just wanted to congradulate you all on the July conference. It was super with a capitol S. Gloria

Our family benefited greatly from the resources made available to us when our son was locally diagnosed with having an unknown form of leukodystrophy. Best wishes for continued success with the research the foundation supports. Randall & Cherie

We salute your science, education and service. Your pamphlet “The Facts aout Leukodystrophy” is the best for coping with the diseases. Dr. Charles

I was very impressed witht he way the type of leukodystrophy I was looking for was explained. Donna

The Medical and Scientific Advisory Board are members of many organizations. I think there was a unanimous feeling among the group that this organization (ULF) is unique and that this is the organization that we give our greatest loyalty to.     Dr. Hugo Moser