We are glad to share with you the monthly #RARETalk with Christine Revkin. Read the interview to discover more about the success of the crowdfunding campaign “A Glimpse of Hope for FOXG1”.
1) Hi Christine, we are very happy to dedicate the June RARETalk to the recent success of the crowdfunding campaign for “A Glimpse of Hope for FOXG1”. Let’s start our interview; tell us a bit about yourself.
I am the mother of Nathanaël, one of the only 2 children in Switzerland with a FOXG1 mutation and he is one of the 281 cases known in the world so far (June 2017).
We live between Geneva and Lausanne. Nathanaël is 21 months old, cannot sit, walk, talk. Cannot use his hands and has severe reflux issues. 87% of FOXG1 children have seizures which don’t respond to medication. We feel every day Nathanaël is alive, is a gift.
2) Can you explain to our readers how the project “A Glimpse of Hope for FOXG1” was born?
A few researchers are interested in FOXG1 as it’s a one of the earliest transcription factors that gives rise to Telencephalon - where the cerebrum develops prenatally.
Research shows FOXG1 plays a role in autism, schizophrenia and epilepsy. While FOXG1 Syndrome is currently a rare condition, a cure could help solve many other neuro-developmental disorders.
Professor Renieri, at the Siena University in Italy, has built a number of projects which all fit in a roadmap which can potentially bring FOXG1 children to clinical trials. One of the key projects she needed funding for is CRiSPR/Cas9 use in replacing the faulty genetic sequence in stem cells issued from FOXG1 patients’ skin.
I told her I’d take on a third job and become a Fundraiser (I’d never done this before) and would do everything I could to help fund that research. I luckily found you, the BLACKSWAN Foundation and all started from there when we built the website and started fundraising.
3) Why did you use the RE(ACT) Community to launch your crowdfunding campaign?
RE(ACT) Community is THE place that made the most sense. Your scientific board could validate the quality of the project and do all the paper work & follow-up on milestones. Just perfect for us. And your crowdfunding site allowed us to get started in no time with low fees (PayPal mainly). Working with the team of the BLACKSWAN Foundation made everything easier – also alleviated some of the painfulness of our family situation. It gave us hope.
4) The project has collected all the funds. In your opinion, what do you think has been the key to success?
We gathered 8K building awareness and mobilising families and friends, but that was far from being enough. Luck was the key to success as without that solid base and the validation of the project by RE(ACT) scientific board, we probably wouldn’t have triggered the interest of two Swiss organisations who agreed to cover the bulk of the amount. We are so blessed!
5) What are the next steps of your project?
Renieri’s research will start in September. In the meantime we are building our Roadmap with Researchers worldwide! For more information, check out our FOXG1 101 presentation, in English and in Français, our Research Deck, and contact firstname.lastname@example.org, or email@example.com.
Besides this interesting and inspiring interview, Christine also gave us many gold tips about how to improve the RE(ACT) Community: more social media integration, more flexibility on page building especially around more languages, easier ways to transfer funds, more widgets to share on other pages such as the counter. And, guess what? We have collected them and in a few weeks you will experience our brand new platform.
Stay tuned and follow us to get more information about this big news! #RAREvolution