Fundraising for Conference
Donation protected
The Galactosemia Foundation
I was seven days old when I was diagnosed with Classic Galactosemia. Galactosemia is often confused as a milk allergy or intolerance, when indeed it is a life-long genetic disorder that affects only one in 80,000. Some of the possible side effects are enlarged liver, kidney failure, cataracts and brain damage.
I am missing the enzyme that breaks down the carbohydrates lactose and galactose. Lactose and galactose are found in many foods, processed foods and many medications.
Currently there is no cure for Galactosemia. The only thing I can do is try to eliminate these toxins from my diet. Even with a restricted diet, individuals can still experience speech and language problems, fine and gross motor skill development delays, specific learning disabilities and premature ovarian failure.
Classic Galactosemia is considered an "Orphaned Disease", which means that very little money is put into medical research to find a treatment or cure. This is very disheartening and scary for individuals or parents of children who suffer from Galactosemia.
This year's conference will be held in Atlanta, GA from July 14-16 2016. My goal is to organize and help sponsor a dinner for older galactosemics and researchers who will be attending the conference to have time to discuss living with Galactosemia as well as have the opportunity for a chance to socialzie and network with those that may not have the opportunity to do so.
I hope to raise funds through this GoFundMe page to help defray the costs of this dinner. Everyone was so kind and generous the last time I asked for donations, and am truly grateful for eveyone's support once again.
Thank you,
Maureen Bell
I was seven days old when I was diagnosed with Classic Galactosemia. Galactosemia is often confused as a milk allergy or intolerance, when indeed it is a life-long genetic disorder that affects only one in 80,000. Some of the possible side effects are enlarged liver, kidney failure, cataracts and brain damage.
I am missing the enzyme that breaks down the carbohydrates lactose and galactose. Lactose and galactose are found in many foods, processed foods and many medications.
Currently there is no cure for Galactosemia. The only thing I can do is try to eliminate these toxins from my diet. Even with a restricted diet, individuals can still experience speech and language problems, fine and gross motor skill development delays, specific learning disabilities and premature ovarian failure.
Classic Galactosemia is considered an "Orphaned Disease", which means that very little money is put into medical research to find a treatment or cure. This is very disheartening and scary for individuals or parents of children who suffer from Galactosemia.
This year's conference will be held in Atlanta, GA from July 14-16 2016. My goal is to organize and help sponsor a dinner for older galactosemics and researchers who will be attending the conference to have time to discuss living with Galactosemia as well as have the opportunity for a chance to socialzie and network with those that may not have the opportunity to do so.
I hope to raise funds through this GoFundMe page to help defray the costs of this dinner. Everyone was so kind and generous the last time I asked for donations, and am truly grateful for eveyone's support once again.
Thank you,
Maureen Bell
Organizer
Maureen Lindenhofen Bell
Organizer
Chalfont, PA
