Welcome to Julianne's Rett Heroes Fundraising Page!
Thank you for visiting our fundraising page! And thanks to all of our wonderful family, friends, customers & vendors for your generous support every year. You help make us one of the top Strollathon fundraising teams in the nation each year, including last year's total of $60,958--in the midst of a pandemic! With so many important causes to support, especially during these difficult times, we are honored to have your support.
We are going to do our best to reach our goal again this year for the 12th Annual Florida Strollathon: Virtual Edition. Strollathons are Rettsyndrome.org’s signature fundraising and awareness events to raise money for essential research of effective treatments and to find a cure for Rett syndrome. In order to keep everyone safe during the ongoing COVID-19 pandemic, this year’s Stroll will be a fun and engaging All Virtual Event to be held on Saturday, November 6th, 2021.
Imagine having a beautiful little girl who develops normally for almost 2 years... walking, talking, playing with toys & books, finger-feeding herself, etc. only to regress and lose all of her verbal, social and fine motor skills in a matter of months. All your hopes & dreams of having a normal, healthy daughter are suddenly dashed as the doctor hands you a brochure with the picture of a young girl in a wheelchair on the cover, and a laundry list of debilitating symptoms inside, and tells you he thinks your daughter has Rett Syndrome.
Rett Syndrome is a genetic neurological disorder that is not normally inherited. It is essentially a new mutation each time it occurs, and becomes apparent after 6-18 months of early normal development. Every child with Rett Syndrome is different and has a unique combination of issues, but the resulting regression leads to lifelong impairments, including lost speech and purposeful use of their hands, seizures, scoliosis, breathing problems, sleep disturbances, anxiety, feeding tubes, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities for the rest of their lives. Sadly, this is one of the better outcomes that can be expected, as too many of our young girls and boys earn their wings to heaven each year.
Rett syndrome is an incredibly complex disorder that affects primarily females and its symptoms are devastating. Imagine the symptoms of Autism, Cerebral Palsy, Parkinson's, Epilepsy and Anxiety Disorder all in one child who cannot speak… this is Rett Syndrome!
But there is also great hope. With $50M invested to date in international research and several ongoing clinical trials, tremendous progress is being made. Rett Syndrome has been shown to be reversible in a lab setting with mice, and scientists have since been exploring many avenues to make this a reality for Julianne and other children.
Our daughter Julianne (now 32 years old) was diagnosed with Rett Syndrome when she was 2 years old, while we were living in New Jersey, far from most of our family and friends in South Florida. Those were very difficult times for us, but having an organization like Rettsyndrome.org really helped us get through that rough period by educating and supporting us, and by simply letting us know that we were not alone. Rettsyndrome.org is contributing to research scientists around the world that have made incredible progress--first, in finding the cause of Rett Syndrome, and hopefully soon in developing a cure.
We are certain that a cure will happen in Julianne's lifetime, but not without the generous support of people like you. You can save her and thousands of others around the world from this devastating disorder.
Time is of the essence. Please donate today. No amount is too small. Your support will mean so much to us. We appreciate your time, consideration and help as we fight for a cure for Rett syndrome. Your help is our hope! Thank You!
*Questions/problems donating, please call or email Angel at any time: 305-342-1843 or firstname.lastname@example.org
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