A Countdown of Seven Actions to Support SCN8A Children and Families
Thanks to The Cute Foundation, Merily and all the families for collaborating to produce the wonderful collage. Note the children in the colored photos have all succumbed to this cruel disease.
7. Support the SCN8A REGISTRY at scn8a.net
Support the innovative, vital SCN8A REGISTRY and interactive resource center for families, clinicians and researchers.
SCN8A Families – in honor of the First International SCN8A Awareness Day, go to scn8a.net today, create your account, and commit to COMPLETING THE SURVEY QUESTIONNAIRE before asap. YOUR participation is essential for future SCN8A research. Remember Alixx is available to support you in the process - acencina@email.arizona.edu.
DONATE to the Registry by participating our Awareness Day Booster campaign or directly to the University of Arizona/SCN8A fund
6. EDUCATE YOURSELF about epilepsy, genetics, scientific research
EDUCATE YOURSELF - commit to continue to learn about SCN8A, genetics, and rare diseases. Stay informed about how policies may either accelerate or retard progress toward answers for all the beautiful SCN8A children – and also reduce or extend their rights and access to needed care.
5. REACH OUT – to someone you know with epilepsy
REACH OUT: It’s estimated that 1 in three people know someone with epilepsy. Reach out to someone you know with epilepsy – ask and earn about their experience.
4. ENGAGE – ask your Congressional representatives to join the Rare Disease Caucus
Contact/encourage your congressman to JOIN THE RARE DISEASE CAUCUS. Go to: http://rareadvocates.org/rarecaucus/ and click on “Ask your member to join the Caucus” and just follow drop down menus to complete.
Outside the US – identify public policy officials who do and/or should be protecting rights and progress for the rare disease community and speak out about key issues in your region.
3. ADVOCATE for the protection of diverse rights of differently-abled.
BECOME AN ADVOCATE to PROTECT OUR CHILDREN”S RIGHTS:
Commit to tracking and speaking out on one or several of the critical public policies being debated which can either help or really hurt our children. Speak out to preserve hard fought rights of the differently-abled. Here are some valuable resources for getting active on these issues:
NORD: https://rarediseases.org/advocate/policy-priorities/issues/
RESEARCH AMERICA: https://rarediseases.org/advocate/policy-priorities/issues/
EVERYLIFE FOUNDATION: http://everylifefoundation.org/about-us/programs-initiatives/
RARE DISEASE LEGISLATIVE ADVOCATES: http://rareadvocates.org/scorecard/
ALLIANCE FOR A STRONGER FDA: https://strengthenfda.org/about/history/
GLOBAL GENES: https://globalgenes.org/
RALLY FOR MEDICAL RESEARCH: http://rallyformedicalresearch.org/
2. GIVE to the cause - VOLUNTEER and/or DONATE
Take action to help SCN8A children!
VOLUNTEER your time and/or DONATE at http://www.wishesforelliott.org/donate to SUPPORT our aggressive efforts to accelerate the pace of the science on SCN8A and bring real hope for children. There are so many promising new research avenues but funding remains a critical barrier. Click on the “How to Help” tab on our website to partner with us to expand our outreach and impact and write us at wishesforelliott@gmail.org with your thoughts on how you might help.
The other organizations also doing important SCN8A work include:
Dr. Hammer’s SCN8A Epilepsy and Related Disorders innovative interactive registry and website, The Cute Syndrome Foundation, and
Ajude o Rafa - Epilepsia SCN8A.
1. Support and practice INCLUSIVENESS
Embrace people and families with differently abled children into your life – break the stigma and isolation. Ask questions, Persist in reaching out to stay connected. Shift your framing of what a get together looks like.
