Nuttall- Wilson Family
Move CDKL5 Forward for Jo!
Fundraising for International Foundation For Cdkl5 Research
Story
Our daughter Josephine "Jo" was five months old when she had her first seizure. Six weeks later we received the diagnosis that would change our lives when she was diagnosed with a rare genetic condition called CDKL5 Deficiency Disorder. Jo would spend the first year of her life in and out of the hospital. She is unable to walk or speak and is legally blind. She is also one of the strongest, bravest and sweetest souls you will ever meet and she brings our family so much joy! We are lucky to have Jo as our daughter and are grateful for the lessons she has taught us.
Having a child with a rare disease can feel very isolating. We have been fortunate to be able to connect to other families facing CDKL5 disorder, not just through the IFCR and social media but also to have met the Villatoro family. Skylar and Jo present differently but face many of the same challenges. To have another CDKL5 family in the same town has been an incredible source of support. CDKL5 has ultimately created a lifelong friendship not only for us as parents, but also for Jordyn and Betty, Skylar and Jo's big sisters. They have learned compassion, acceptance, and unconditional love at such a young age. We are teaming up with the Villatoro family again this year to raise awareness and fundraise in hopes a cure for our beautiful daughters.
Join us as we raise awareness and funds this June as we work to Move CDKL5 Forward for the 3nd year in a row! We are forever grateful for your support as we aim to reach our fundraising goal! All funds raised go to the International Foundation for CDKL5 Resarch (IFCR), a 501(c)(3) nonprofit organization that supports families and funds scientific research with the hope for better treatments and ultimately a cure for CDKL5. To learn more about Jo's condition and the IFCR, visit www.cdkl5.com
There are many ways to be involved in our campaign!
-Make a donation today and help us reach our fundraising goal! Every donation helps and is sincerely appreciated. You can also help us reach our fundraising goal by sharing the link to our fundraising page.
-If you are local, visit our neighborhood YARD SALE on June 10th from 9am-2pm at 21 Taft Mill Rd, South Grafton. There will be tons of great items for sale (clothing, toys, books, gym equipment, furniture etc) and proceeds will go to our fundraiser! Come check it out!
-Purchase a Move CDKL5 Forward shirt and rock it this month! Not only will you look cool while helping spread awareness but proceeds benefit the IFCR! Copy & paste the website below into your browser to purchase a custom #JoStrong shirt!
https://www.zazzle.com/z/j4k6l5w6
-Get out and MOVE in June- share your activity on social media and use the hashtag #CDKL5Forward to help raise awareness! You can also join our team "Move CDKL5 Forward Grafton" to log miles and help us reach the IFCR goal of 18,000 miles moved in June! Want to make your miles count but don't want to join the team? You can keep track and send them to me!
