Children’s Book Author & rettsyndrome.org Bring First-ever Strollathon To SC For Rett Syndrome Awareness Month

Columbia, SC Author and Educator Stephanie Gives-Winckler is spearheading the 1st Annual South Carolina Strollathon: Virtual Edition for Rettsyndrome.org to take place on Saturday, October 24, 2020. Local and nationwide families affected by Rett syndrome will virtually fundraise and stroll to overpower the rare disorder and create a world with it. Typically done as an outdoor, in-person event, this will be the first of its kind where families will have to simultaneously participate in separate environments due to the pandemic

The purpose of Rettsyndrome.org strollathons is to bring awareness to the disorder, help raise funds for research, and empower families with resources and support. After being an active participant throughout the years for strollathons in other states, Stephanie is finally bringing this event to South Carolina and serving as SC’s Chair for the fundraiser.

Stephanie was inspired to create this fundraiser for SC because her late daughter, Tiffanie Nina Simone Hayes passed away in 2011 due to complications with Rett Syndrome. The pandemic has impacted the format of the event this year, turning it into a virtual strollathon. Participants may stroll in their neighborhood, local trail, or even a treadmill.

ABOUT RETT SYNDROME

Rett syndrome is a genetic neurological disorder that occurs almost exclusively in females (but can be seen in males) and becomes apparent after 6-18 months of early normal development. It results in a regression that leads to lifelong impairments. Those inflicted with this disorder have multiple dysfunctions: loss of speech, seizures, and scoliosis. Many develop irregular breathing patterns, and more than half of those affected lose their ability to walk. Maximum assistance is required with even the most basic daily activities. The hallmark sign of Rett syndrome is near constant repetitive hand movements while awake.

Since the discovery of the gene that causes Rett syndrome in 1999, as well as research that provides the theory of reversibility in mice in 2007, there is now an unprecedented and historic opportunity to fund crucial new research.

MORE ABOUT RETTSYNDROME.ORG:

The International Rett Syndrome Foundation (known today as Rettsyndrome.org) was founded as a not-for-profit organization in 1999. Their mission is to accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge, and connectivity. They advocate and raise awareness about Rett syndrome so the scientific and medical community, policymakers, educators, caregivers, and the general public can more thoroughly know, understand, and be motivated to help the research efforts and individuals living with the disorder on a daily basis.

For 20 years, Rettsyndrome.org has relentlessly pursued advanced and comprehensive research to transform the lives of all those affected by Rett syndrome. Currently, the organization is funding research to development compounds and interventions to treat and cure Rett syndrome. Rettsyndrome.org has supported the development of multiple compounds to date that have advanced to various stages of human clinical trials, with the first FDA approved Phase 3 Clinical Trial for Rett syndrome taking place in 2019.

The Strollathon program, Rettsyndrome.org’s signature fundraising event, has brought families together to fundraise and strengthen local Rett communities since 2002. Strollathons have raised nearly $15 million nationwide for research treatments and a cure in the last 18 years. As the world’s leading private non-profit organization, they have funded more than $49 million for research to date.

MORE ABOUT STEPHANIE GIVES-WINCKLER (AUTHOR, ILLUSTRATOR, EDUCATOR, & 2020 SC STROLLATHON CHAIR):

Stephanie Gives-Winckler is an author, educator, artist, illustrator, speaker, and the mother of Tiffanie Nina Simone Hayes. Stephanie was born in Bronx, NY where she developed a love for drawing. She received her Associates of Arts degree from Midlands Technical College and is currently an educator at Kathwood Preschool in Columbia, South Carolina.

After the passing of her only child, Gives established The Tiffanie Nina Simone Foundation in 2015 to help inspire children to see their value no matter what circumstances they were dealing with. The foundation is also used to bring awareness to Rett Syndrome. Additionally, Stephanie authored and illustrated her very own children’s book, The Best Girlfriends Ever, to keep the memory of her daughter fresh and indelible. This book focuses heavily on the acceptance of special needs kids and the power of friendship.

Stephanie and her team, “Tiffishope,” have been involved with Rettsyndrome.org for several years. This is the first time she has taken on the strollathon herself, which is no small order. The impact of Covid-19 has not made the task any easier. With her daughter’s spirit, she is pressing on to make this virtual event a success. Through her involvement with her own foundation, Rettsyndrome.org strollathans, and her children’s book, Stephanie has found a way to make a difference in memory of her daughter Tiffanie while raising awareness of a disease that is not well known.


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