JSRDF @jsrdf
The Joubert Syndrome & Related Disorders Foundation supports those affected by Joubert syndrome and related disorders. https://t.co/vc5ETqmEBv give.classy.org/RaceforRare21 United States Joined November 2009-
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Did you know that child programming is included in the conference fee? Parents and caregivers can enjoy the sessions knowing that their children (aged 1-18) are cared for by ACCENT on Children's Arrangements staff and JSRDF volunteers. Read more at whova.com/web/BdkHkbBC%4….
Yosef Travis is a #JSRDF board member who writes content for the website and social media posts. He and his family are eagerly looking forward to the upcoming conference in Seattle! Listen to their pitch in the video and then register at whova.com/web/BdkHkbBC%4….
The Ballocks are excited to attend their 3rd conference! Amy, a JSRDF board member, and Matt are looking forward to meeting up with friends again. Delaney (12) can't wait for another great dance party! Register at whova.com/web/BdkHkbBC%4… and create your own favorite memories.
Did you know that we offer virtual passes to the conference for those who cannot attend in person? The pass gives you access to livestreamed sessions during the conference and On Demand sessions for 6 months after the conference. Register today at whova.com/web/BdkHkbBC%4….
Initial scholarship requests for the conference have been finalized. As is there still additional money left in the fund, additional requests will be accepted on a rolling basis. Remember, scholarships cover a portion of the total costs. Apply at ow.ly/RpeQ50NoikQ.
Kristin Chacko is a JSRDF board member and the force behind our new website. Kristin and Jude (age 4) are excited to attend their first JS #conference in July. Jude is excited to make new friends and find playgrounds near the hotel! Register today to join the Chackos!
Today is a celebration of firsts. -First day of March. -First day of our brand new website at jsrdf.org! AND -First day of conference registration! Watch our photogenic leader share all the details at youtube.com/watch?v=cAuf3O….
Will you join us in Seattle in July 2023, whether in person or via the brand-new virtual option? Review the conference page at ow.ly/RAi650MG90X. Registration opens March 1, 2023. #JoubertSyndrome #familysupport
Flash contest! Raise an additional $1,000 on your page at classy.org/campaign/31k-i… by 11:59 PM MDT tonight and win your choice of one free admission or one free night at the conference in 2023 ($199 value). Limit one per fundraising page/team.
Weekly challenge 4 starts today! The person who raises the most money on their fundraising page at classy.org/campaign/31k-i… by 11:59 PM MDT on 10/31/2022 will receive a brand-new iPad mini! No purchase necessary.
The fourth video of Stephen and Izzy Mack's #JoubertSyndrome #Awareness Month Special launched today! The duo collaborated to bring you key updates and announcements. Check out the full video at: youtu.be/cE1y4Co4yeM
Weekly challenge 3 starts today! The person who receives the highest number of individual donors on their fundraising page (from 10/17/2022 12:00 AM MDT-10/22/2022 11:59 PM MDT) will receive 1 free registration to the conference in 2023 ($199 value). No purchase necessary.
The third video for #JoubertSyndrome Awareness Month hit the internet today! Stephen Mack, JSRDF president, and Izzy collaborated to share JS updates and highlight upcoming events. Check out the full video at: youtu.be/sJWWaDk6qjo.
Weekly challenge 2 starts today! To be entered into the raffle, you must like and share this post by 11: 59 PM MST on Oct 15th MST. Let’s keep the ball rolling on promoting #JoubertSyndrome awareness! 1 lucky winner will receive a $100 Visa gift card. No purchase necessary.
Contest rules: To be entered into the raffle, you must make a fundraising page on give.classy.org/31K31Days by 11: 59 PM MST on Oct 8th MST. 1 lucky winner will receive 1 free night's stay at the upcoming conference in Seattle ($199 Value)! No purchase necessary.
1 day until #joubertsyndrome #awareness month and the fundraiser. Get ready to share JS knowledge and support jsrdf.org!
JSRDF President, Stephen Mack, shares important information about the next #conference and the foundation's strategic plan to grow our efforts on behalf of individuals with #JoubertSyndrome and their families at ow.ly/osr550KGiJv.
Today is the LAST DAY to apply for the JSRDF board. If you’re strong in one area it’s OK to be a little lacking in another. That’s especially true of people who may have valuable skills (marketing, accounting, research, nonprofit management, etc.). jsrdf.org/join-the-board…
The deadline to apply to serve on the board of directors of the JSRDF is Sunday, May 22. Get more info at: jsrdf.org/join-the-board…
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