window width = px
progress bar width = px

Help Our Cause

Share

Brielle Rose

Welcome to my Cure Angelman NOW fundraising page!

Angelman Syndrome (AS) is a rare disorder affecting approximately 1 in 15,000 live births and is characterized by severe developmental delays, problems with motor coordination and balance (ataxia), loss of speech and epilepsy. Because of recent advancements in the understanding of AS, a cure for this disorder is not only possible, but probable. AS has been cured in the lab using several different approaches. We know what causes AS. We know that despite its often devastating effects, it is a simple disorder involving only one gene. We also know that curing AS will have a profound impact on other related disorders, such as Autism and Alzheimer Disease.

FAST is the largest non-governmental funder of Angelman Syndrome research and the only organization in the world that has a detailed plan and clear path towards a cure.  FAST is setting a $2 million community goal for this year. If we can meet this $2 million goal, we have an excellent chance of getting those funds matched.

FAST is committed to bringing life-changing treatments to clinical trial within two years, but we need your help. We are asking everyone to join us in the Cure Angelman Now initiative because together, we CAN do this. Our time is now and every single dollar counts in getting us closer to our goal.

My dearest friends and family, 

I will never forget the day we got the call with Brielle's genetic results. At the time, I was not really aware of what they were testing Brielle for...my neurologist mentioned they were trying to "dig a little deeper", but he never confirmed it. I had called the doctor's office to try to figure out why the results were taking so long and it was then that they informed me they were testing for Angelman Syndrome, Fragile X, and Rett Syndrome. I thought we ruled out Angelman Syndrome with her first round of genetic testing so I was fairly certain they were way off base. A couple of days later, when finally hearing the results, I remember falling to my knees screaming and crying with my husband--all I could think was "why her?" Why does my sweet precious little girl have to have something so devastating? Does she really have it even--how could she? She's practically perfect, just some minor delays in speech and slight balance issues!!!

Nothing can prepare you to hear a diagnosis like that for your baby. You become obsessed--researching, researching, researching. What does it mean? How did it happen? What does her future hold? Seizures are common but HOW common? Will she ever talk? The answers I found were all devastating--95% have seizures, even more have less than 5 words, she would need care for the rest of her life. Devastating.

A few weeks later after more researching, I found out that there were several doctors and scientists who were working on a cure and that Angelman Syndrome would, without a doubt, be cured SOON! No more absence seizures for Brielle, maybe she'll be able to speak one day? Maybe she'll be able to tell me how she's feeling or what she's really thinking about that silly dance I do to the Mickey Mouse Hot Dog song?! Maybe she'll be able to live on her own one day? Have a job? 

We are so unbelievably close to curing this terrible genetic anomaly. Your donation of even just $5 could make such a difference.

Click SPONSOR ME to donate to my efforts or click Register to create your own site and join me in raising funds for Cure Angelman NOW!

101%
  • Goal $3,000.00
  • Raised $3,035.00
Top Donations
  • Chadd Family - $200.00
  • Klaus Petersen - $200.00
  • Rose Marie Greer - $200.00
  • Rose Marie Greer - $200.00
  • Hastings counselors - $150.00
Sponsors
Donor Date Amount Message
Chadd Family 6/25/2017 $200.00 We hope that Angelman Syndrome will be cured soon, especially for Brielle.
Klaus Petersen 5/30/2017 $200.00 My heartfelt thoughts and hopeful wishes are always with you!
Giordanos 5/4/2017 $50.00 Happy birthday, Baby Brie. We all love you so much!
Rose Marie Greer 2/15/2017 $200.00 For our little sweetheart on International Angelman's Day
Lauren Riegler 12/18/2016 $25.00 Love you so much!
View All


Window Width: px

Window Height: px