So you have a diagnosis of Sandhoff Disease, now what you might be thinking. Well this website is dedicated to information, guidance, support, research and honoring our children affected by this dreaded disease. This site is created by parents and all information has come from various on line resources, we have compiled it all together on one site to bring you the most valuable information and resources for this disease. We have a parental support system as well and are here for any families with children diagnosed with Sandhoff Disease, please email us at any time.
Please send all emails to firstname.lastname@example.org
We now have a Facebook Group for all Sandhoff children, their families and friends. To get to the group just search:
SANDHOFF DISEASE on FACEBOOK and look for the group with the Rainbow Icon~!
we are in the process of adding members and transferring all this sites information over to the group.
So Simply send us a Join Group request !!!
~~~~~~ JOIN OUR SANDHOFF DISEASE FACEBOOK GROUP ~~~~~~
To the following childrens familys, we no longer have current contact information for you, if you see this message please either email me at email@example.com or Join our Facebook group if you would like. Looking forward to getting back in touch with everyone soon.
Gemma Danielle Lea
Lilianna Aurora Owsianyk-Foster
Theodore "Teddy" Naemyd Schwei
Julie Hjelle Saeter
Madison Grace Perreault
Kacee Reese Lather
Dominic "Nico" Edmonson