15% of all sales goes to NTSAD's Research Initiative Fund
for Canavan, Tay-Sachs, GM1 or Sandhoff research!
September 17, 2016
7:00pm to 9:00pm
Miamisburg, Ohio
Call Joan at (617) 277-4463 if you're interested in attending
this clothing sale to benefit hope.
Meadow Brook Club
Jericho, NY
Monday, October 7th, 2019
For more information or to register by phone, please contact NTSAD at (617) 277-4463.
Jack Alan Kliger was diagnosed with Canavan Disease when he was nine months old. Jack was given a life expectancy of three to five years. Jack passed away in April 2008 just shy of his 14th birthday.
Throughout his short life his family received support and encouragement by being part of the larger family of NTSAD and its members whose children fought similar diseases and similar battles. NTSAD offers parents information, explanations and resources as well as heartfelt support.
Your support will help NTSAD with their goal to eradicate Canavan, Tay-Sachs and similar diseases and also to help the children afflicted with these diseases and their families cope with the pain and suffering associated with these diseases.
Funding for Genetic Neurological DiseasesMy name is Phil Rhodes I am 50 years old and on 2/11/2014 my sister and I were diagnosed with a rare disease called GM-2 Gangliosidosis (Late Onset Sandhoff Disease).
Sandhoff is a progressive neurological genetic disorder caused by the absence of two vital enzymes, which affects the central nervous system and is deadly in the infantile and juvenile form. It is one of over 50 genetically inherited disorders known as Lysosomal Storage Diseases, and there is NO CURE!
After I was diagnosed I made a promise to do all I could to help find a cure.
From age 8 to 18, I often remember telling my mother of the sensation of pins and needles in my hands and feet, she took me to the doctor and he didn’t have any answers and I don’t remember getting any test done at that time. I continued going from doctor to doctor and getting no answers except “It’s all in your head.” At age 24 I found it difficult to climb stairs, get up off the floor, and stand from a seated position, I also couldn’t squat and stand without using my hands to get up. I was now 39 years old and told my new doctor my concerns and he referred me to a neurologist who examined me and scheduled an EMG, after the test was over he said it was abnormal and suggested I go to Johns Hopkins and made me an appointment. At Johns Hopkins I went through numerous MRI’s, EMG’s, blood test, nerve and muscle biopsy, and neurological exams for 5 years without a diagnosis, all they told me was I had an inherited genetic neuropathy. In 2012 I found a study on neurological disorders online at The N.I.H, after reviewing my medical history they wanted some family members to come and have genetic testing done, after a year and a half and forty years total, I was finally diagnosed with Late Onset Sandhoff Disease.
Please help us find a cure!
Thank you. Phil
Over the past 6 years, we have been so Blessed with the kindness of so many people who have donated their hard earned money to help us fund research to one day find treatment and a possible cure for GM1 research.
With four Incredible Bean Bag Tournaments (Brodryck’s Bean Bag Tourney, The Beaver Den Winter Classic, and the BC Mid-Summer Bonanza) we have raised close to $20,000 in 6 years!!!!!! We thank everyone so much for their hard work, kindness, and dedication to our Sweet Brodryck’s Legacy. It means the world to us that so many people have taken the time to remember and honour our Brodryck. This money goes directly into research with hopes that we can find that breakthrough. Hope is on the Horizon that a cure will be found and no other child will die from this dreaded disease.
You can support our efforts to raise funds for research by make a gift here.
Rex Lairdsen Franzen
October 10, 2014 - October 22, 2016
Rex's life would seem too short to many, but those who were touched by him understood that the quality of his existence far exceed the quantity of his time on earth. His gentle smile could melt the hearts of those around him and his giggle could make anyone laugh out loud with him. Although he never spoke a word, his voice and thoughts could always be heard. He possessed amazing strength even though his little body was made weak by Sandhoff Disease.
With his courage, he led us to believe that each day is a blessing and an opportunity to create lasting memories. He could spend hours rocking in his favorite chair while cuddling close to those he loved so much. He enjoyed music, the wind in his hair and the rustling of leaves in the trees. He loved to be massaged with coconut oil and the sound of his Daddy's voice. He loved to be surrounded by his brothers playing and to be snuggled close to his mamma while nursing.
Rex lived and died without sin and truly wanted nothing more in his short life than to be loved and caressed. With his passing, we want to remind others that his life is one to be celebrated and remembered. Please help us honor his memory by learning more about his fatal genetic disease, Sandhoff, and spreading awareness in your communities. Donating to the National Tay-Sachs & Allied Diseases Association, a not-for-profit organization, will help fund research so that no other family has to know the pain of losing their child to these genetic diseases.
With grateful hearts,
Craig, Amber, Erick, Seth, Piper and Gus Franzen
P.S. If you have performed a random act of kindness in memory of Rex, please share your kindness moment on his Facebook Page - Ride Along with Rex - by clicking on this link.
