RettGirl.org
If you’ve ever had to ask “What do I do when my daughter outgrows the largest stroller in the stores?” or “What straw will help my daughter learn how to sip?” then you know just one of the many challenges facing parents of girls with Rett Syndrome, a debilitating neurological disorder that primarily affects girls and affects every system of their bodies.
“All too often I have done an exhaustive search on the internet for a solution, ordered, and then read about another ideal product the very next day,” explained Ingrid Harding, site founder whose 8-year-old daughter, Sarah, suffers from Rett Syndrome. “This information has to be put in one spot.”
Necessity is the mother of invention, as www.RettGirl.org now enables parents of girls suffering from Rett Syndrome to share product information, share tips and recommend therapies. The dynamic and interactive niche site was launched by Harding’s non-profit Girl Power 2 Cure, Inc. to relieve parents of the burden of the hunt, and help them learn from each other’s successes.
Parents had previously shared this type of information in their blogs, message boards or social networking sites, but these sites are not organized for the task, and are not easily searchable. Now parents can submit product ideas and quickly search for recommendations on almost anything they need. Product categories range from feeding, communication, clothing, sensory, nutrition, mobility and media. Doctors and therapists are also recommended, sorted by geographic region. Families will also be able to keep abreast of fundraisers as well as access a marketplace to sell or swap special needs equipment.
True to Girl Power 2 Cure’s mantra of keeping a lean organization, Harding developed RettGirl.org from her home office using free and donated software. All of Girl Power 2 Cure’s proceeds go to the Rett Syndrome Research Trust, a non-profit dedicated solely to researching and finding a cure for this devastating disorder.
Through RettGirl.org, Harding hopes to offer this online “office water cooler” where parents can gather at any hour and help improve their daughters’ lives. “Girls with Rett Syndrome need complete assistance with every aspect of their lives,” said Harding. “These girls need a lot and parents need help to make it easier to help them.”
For more information please visit http://www.rettgirl.org, http://www.girlpower2cure.org or http://www.rsrt.org.
About Rett Syndrome
Rett Syndrome is the most severe form of autism and the leading genetic cause of severe impairment in females. The condition randomly strikes another young girl every 90 minutes, leaving them unable to speak, walk or use their hands. In 2007, research proved the syndrome is reversible in mice. Medical experts consider Rett Syndrome research the key to understanding related disorders such as Parkinson's and Alzheimer's.
About Girl Power 2 Cure
Girl Power 2 Cure, Inc is a 501c3 non-profit organization dedicated to raising awareness and funds for a cure for Rett Syndrome. We are about harnessing the spirit of girls as volunteers, as mentors, and as a power of positive change in support of their fellow girlfriends who are suffering from Rett Syndrome.
Photo:
http://www.prlog.org/
