Dear GRIN2B Families and extended Community Members,
We did it! We survived 2020! In the United States, the first few days of isolation fell right during our GRIN2B Awareness Week (March 16 – 22, 2020). The rest of March and April were spent in a daze; shuffling around our plans, canceling events, applying for grants and reimagining our year. Kudos to our team for pulling through!
While 2020 did not turn out the way we expected and our fundraising was understandably down a little, we are still very proud of all we were able to achieve in such a life-changing year. Please take a look at our Year In Review summary and know that all of our accomplishments are because of you, our supporters. Whether you volunteered your time, made a financial contribution, sent us words of encouragement or liked and shared our social media posts, our loyal community was always at the forefront of our minds.
We came out of 2020 weary, but ready to start fresh, and our 2021 plans are already well underway. 2021 will still see us feeling the effects of COVID, but we are now able to meet our limitations with ease, flexibility, creativity and open hearts and minds.
2021, here we come! If you’re able to support our 2021 mission, please consider making a donation.
Onward and upward,
Liz Marfia-Ash, GRIN2B Foundation Board President
GRIN2B Foundation – 2020 Year In Review
Feb 2020: Attended Global Genes Data DIY Conference in Houston, TX
March 2020: GRIN2B Awareness Week (3rd year!)
May 2020: Awarded Grant from Global Genes to provide Covid Assistance Relief to GRIN2B families
June 2020: Provided funding for the University of Colorado’s GRIN Variant Patient Registry
Sept 2020: 1st Bee Active for GRIN2B Virtual Walk/Run raises $25k
Nov 2020: Awarded $45K grant to Dr. Hongjie Yuan of Emory University
Additional 2020 Accomplishments
“I would like to thank the GRIN2B Foundation for their generosity in providing my family with the Rare Impact Grant…I appreciate your help during this stressful time.”
– The Lopez Family
Operational & Administrative
- Raised $104K+ in income.
- Received Seed grant from the National Organization for Rare Disorders to fund the setup of our new Donor Management System.
- Added GRIN2B mom, Lauren Hookings, to the Board of Directors.
Support
- Provided $15K in direct assistance to 17 families facing financial hardship due to the COVID-19 Pandemic.
- Private parent support group grew from 481 to 578 members, representing 45 countries.
- Hosted 4 “Bee Happy Hour” Zoom meet-ups for GRIN2B parents.
- 136 families completed our family registry on our website.
- Compiled and shared a blog on Covid Resources.
- Produced several episodes of our podcast, Celebrating Rare: A GRIN2B Podcast.
- GRIN2B Community Pulse Survey completed by 108 GRIN2B parents.
- Launched commemorative necklace/earrings set in honor of Ray’Ah, a young girl with GRIN2B who passed away in early 2020.
Awareness
- Shared 7 facts about GRIN2B during March Awareness Week and profiled 15 patients.
- Produced and shared two new GRIN2B Symptoms Videos and had them translated into both French and Spanish.
- Created and sold new Awareness apparel and accessories.
- 1400+ followers on our public Facebook page.
Research & Medical
- Launched 2nd Research Grant Cycle in June.
- Produced 3 videos, encouraging families to enroll in the GRIN Variant Patient Registry.
- Published Q&A with Dr. Tim Benke on our blog about patient registries and clinical trials.
- Participated in GRIN Genes Roundtable discussions, hosted by our partner organization, Cure GRIN Foundation.
On the horizon for 2021
- 4th year celebrating GRIN2B Awareness in March.
- Launch 1st Equipment Assistance Grant Program.
- Attend Global Genes Rare on the Road Leadership Conference in Chicago, May 22, 2021.
- Host Virtual GRIN2B webinar series in July and encourage/help host regional Family Meetups.
- Work with Dr. Caitlin Hudac to resume her Covid-delayed EEG study.
- 2nd Bee Active for GRIN2B Virtual Walk/Run in September 2021.
- Host 2nd Golf Outing Fundraiser in Boonton, NJ (Date tbd, pending local COVID restrictions).
- Continue to collaborate with GRIN medical community and partner organizations on future research projects to fund.
- Continue to recruit new volunteers, board members and advisors.