Waves for Willow - CDKL5 Awareness Challenge
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Willow Porter is a sweet girl that has brought so much joy to her family - Pete, Catherine, big sister Aria and little sister Maizie - as well as the extended family she has across the country. Willow was born with a rare genetic disorder called CDKL5 deficiency disorder, characterized by seizures that begin in infancy, followed by significant delays in many aspects of development.
Willow's family is starting a social challenge to spread awareness about CDKL5 and humbly invite you to take part in caring for Willow. This fundraiser is so important because every bit of help will support Willow's growth and development. Access to appropriate medical care and resources, especially during this critical stage of early childhood development, can make a huge impact in Willow's care and management of CDKL5.
June is CDKL5 month so we will kick off the challenge on June 1. We encourage you to help reach our goal throughout the month!
The Challenge
CDKL5 prohibits Willow from controlling her movements, and we invite you to make “Waves For Willow” by showing off your best wave!
- Post a video of you making the wave to raise awareness for CDKL5 and the waves Willow rides everyday. Get creative with your wave!
- Include the social caption below to your post and tag 3 or more friends.
- Reshare the video on your story with the Go Fund Me link: www.bit.ly/wavesforwillow
- If possible, send your wave video to THIS Whats App group so that we can edit the videos together.
Social Caption
Join the #WavesForWillow movement!
CDKL5 may limit Willow from moving with purpose but it won't stop us from moving for her. June is CDKL5 month and we are raising awareness with our social challenge. I kindly challenge you to #RideTheWaves with us by sharing a video of your best wave dance move, tagging 3 or more friends, and visiting her Go Fund Me page.
Learn more at: bit.ly/wavesforwillow
I challenge (Tag 3 friends) to make #WavesForWillow!
#CDKL5Awareness #HopeForACure #RidinWithWillow
Example of Wave Video
Willow’s Current Needs
- NAPA Intensive (https://www.napacenter.org/)
- Movement Solutions Intensive (https://www.movementsolutions-socal.org/)
- Chiropractor (http://nexusfamilychiropractic.com/)
- TheraSuit (http://suittherapy.com/)
- Bike Trailer (https://www.amazon.com/gp/aw/d/B084BRFQ21/ref=ox_sc_saved_image_7?smid=A2TW5EOR5DY6TJ&psc=1)
- Bed (still researching options)
How You Can Help
By contributing to Riding the Waves with Willow, big or small, you will be supporting her throughout her ever-changing journey. We know it's going to be a wild ride for the family. By contributing to this fund, you can help alleviate financial barriers so that the family can continue to focus on the best medical care for Willow, no matter the cost.
We really appreciate you being a part of Willow's life and will keep you posted with updates along the way. We are hoping to surround Willow and her family with the love and support they need to ride the wave of CDKL5!
Additional Ways to Help
- Spread the word by sharing our fundraising link on Facebook: www.bit.ly/wavesforwillow
- Learn more about CDKL5; check out the International Foundation for CDKL5 Research: https://www.cdkl5.com/about-cdkl5/
Organizer and beneficiary
Willows Family
Organizer
San Clemente, CA
Catherine Anselmo
Beneficiary