Blue Jeans for Rare Genes #Galactosemia
Organized by: Jill Donovan
February 23, 2016
Did you know that Feb. 29th is Rare Disease Day? Feb. 29th is a rare day - as is the rare disease named Galactosemia that my daughter has. A person with Galactosemia cannot consume food containing lactose or galactose as they are not able to fully metabolize the galactose, so it can build up in their cells and tissues causing potential complications. Most people have never heard of it as was the case with my family, until she was diagnosed 3 days after her birth. The routine newborn heel prick blood test picked it up and she was place on the State Registry of Rare Diseases. I am happy to report she is currently doing well. It is the future that remains unknown with regards to learning, speech and medical issues associated with Galactosemia. I could go on and on about what we have learned, but what I really want to do is reach out for your support for research.
Galactosemia is considered an orphan disorder – that is there is no/limited funding for research other than what families raise. YOUR DONATION WILL MAKE A DIFFERENCE!! Any dollar donation amount is greatly appreciated. All the funds collected will go directly to Galactosemia research.
Donate and wear blue jeans on Monday February 29th to help spread awareness! Blue Jeans for Rare Genes # Galactosemia.
We thank you in advance!
For more information on Galactosemia, please visit www.galactosemia.org