A Cure for Christmas 3.0

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Our sweet daughter, Gisele, was diagnosed with atypical Rett Syndrome in September 2014 at the age of 3 years old. In the two years since her diagnosis, my wife and I have mostly adjusted to the new normal of constant challenges, daily therapies, and an unknown future. But, we remain optimistic that the research, funded in part by generous donations to campaigns such as this, will one day cure our daughter and the 350,000 girls and women around the world like her.


Currently, there is neither a cure nor effective treatments. HOWEVER, the research is promising and donations from this campaign make a significant impact to the cause.


PRIMER ON RETT SYNDROME

Rett Syndrome is a neurological disorder that affects less than 1 in 10,000 girls, striking completely randomly during childhood.

Picture a perfectly [thought-to-be] healthy child, developing normally (crawling, walking, talking, etc.) for several months to years then rapidly regressing

Picture a child with: severe autism + cerebral palsy + epilepsy + anxiety + speech and behavior disorder(s) + too many others to mention = a child with Rett Syndrome


(You can read more by clicking on the FAQ tab at the top of this page or clicking the following links:

About Rett Syndrome

Current Research


MY GOAL

Raise at least $50,000 to help contribute to finding treatments and a cure.


MY WISH FOR GISELE

While most children wish for Santa to bring them toys and games, and then unwrap the gifts in the presence of loving parents and relatives, my daughter is unable to communicate her wishes or even unwrap presents. My wish for Gisele is that one day she can "unwrap" the best gift of all, a cure for Rett.


MY PLEDGE

Like in previous A Cure for Christmas campaigns, I will grow my beard beginning on Giving Tuesday (Nov 29th) and keep it without trimming until after Christmas. On Christmas morning, I dress as Santa to go along with my beard and help my daughter unwrap presents. I look forward to the year when she the present she "unwraps" is a cure for Rett.


We will match $1,000 for every $10,000 that's donated (up to a match of $10,000).


Thank you for your support!

MJ and Brenna


P.S.  RSRT (Rett Syndrome Research Trust), has an incredibly low expense ratio. Over 95% of funds raised go directly to research.


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.

Learn more about Rett here.

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.

Learn more about RSRT here.

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  1. Nicole Welch 
    1 year ago
    $250
  2. Rebecca Perlmutter 
    1 year ago
    $500
  3. Michael Memoly 
    2 years ago
    $250
  4. LBA Realty Charitable Foundation Fund 
    2 years ago
    $2,500
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    2 years ago
    $500
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    2 years ago
    $500
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    2 years ago
    $50
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    2 years ago
    $250
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    2 years ago
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    2 years ago
    $1,000
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    2 years ago
    $500
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    2 years ago
    $100
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    2 years ago
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    2 years ago
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    2 years ago
    $75
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    2 years ago
    $50
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    2 years ago
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    2 years ago
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    2 years ago
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  92. Eric Brown 
    2 years ago
    $500
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    2 years ago
    $100
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  98. Lynn Knox 
    2 years ago
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  99. Nicole Welch 
    2 years ago
    $500
  100. Sue Johnson 
    2 years ago
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    2 years ago
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    2 years ago
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    $100
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    $100
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    $30
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    2 years ago
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  190. Anonymous  
    2 years ago
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