UPDATE: THANKS FOR YOUR SUPPORT!
UPDATE: SPIN FOR RETT SYNDROME!
We’ve already raised over $6,000 for Rett research. Now we are doing a spin event and plan to ride for 5 hours to add to this total. Your contribution will help spur us on as we ride. You may also support by booking a bike to ride alongside us for part of the way.
Show your support and book your bike and time slot:
Contact James: firstname.lastname@example.org
Our little Addison was born in February 2014. Our family of four that we always dreamed of was complete. She was a very happy and content baby. She progressed normally for the first 8 months, but from there we began to notice changes. Whilst we intervened early with physiotherapy and occupational therapy, Addison began to regress. Things that she could once do like roll over, feed herself and play with her favourite toys were being slowly taken from her. At 12 months, in the absence of a formal diagnosis, we were told that Addi had Global Developmental Delay. By 18 months we were told that our daughter may never walk, will have limited communication skills and will most likely need lifelong care. Our world was crumbling around us. It was as if all our dreams and hopes for our Addi came crashing down.
We searched for answers and four months before her third birthday we finally received a formal diagnosis. Addi has Rett Syndrome. Rett is a rare genetic neurological disorder. Addi has never crawled, walked, talked and has lost what little use of her hands she once had. She is constantly affected by bouts of hyperventilation and breath holding and she has recurring sleep issues. We have watched our Addi lose almost all the bodily control that she once had. And this is all before the age of three. The road ahead is terrifying with the possibilities of scoliosis, seizures, eating difficulties, heart conditions and more. Our lives have been changed forever.
There is no cure for Rett at the moment. However, there is great hope for the 350 000 girls and women around the world living with Rett. Scientists have managed to reverse Rett Syndrome in mice. With your help scientists can bring that cure to our girls. You can help save their lives. Addi is a fighter. She smiles more days than not and she works so incredibly hard every single moment of every day to overcome the limitations of her body. We have joined the fight against Rett….will you join us in making Rett history?
James & Daleane Henshall-Howard
What is Rett Syndrome?
Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.
Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.
Who is RSRT?
The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.
By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.