Dear GRIN2B Families, Friends and Supporters,

2022 was our biggest year yet! We were thrilled to connect in person at our July GRIN2B Family Weekend in Chicago and at our Bee Active fundraising events. We started laying groundwork for clinical trial readiness through the development of our Center Of Excellence, our partnership with Duke University on their Orca Communication Measure and, most excitedly, through our work with GRIN Therapeutics on the development of their Radiprodil clinical trial – the first commercial trial for GRIN2B patients. 2022 also saw us supporting families in familiar and unexpected ways. We supported and rescued a family from Ukraine, wrote letters of support for families in need of local services and we offered up an ongoing way for parents to connect through our Facebook group and our Bee Connected Zoom Meetups. 

For research, we continued our partnership with Dr. Stephen Traynelis, awarding his lab $25K to continue their translational work with GRIN2B variants and animal models that are directed toward assessing potential therapeutic strategies. We nominated Dr. Riley Perszyk from Emory University to receive a grant through the Uplifting Athletes program and were thrilled when Dr. Persyk was chosen. We are also working with our sister organization, Cure GRIN Foundation, to assess potential future research projects to co-fund.

Our mission is intentionally broad to meet the diverse needs of our community. After 5 years, we are incredibly proud of our growth, but regret that we are limited in the amount of projects we can take on and research we can fund. Sometimes, we have to say no to projects due to limitations of funding, time and manpower. Rest assured that all our choices and programs are deliberate based on feedback and survey results from our community.

We are committed, as always, to providing support and education to our GRIN2B families, promoting awareness of this ultra-rare disorder and continuing to fund research. 

If you are interested in helping our mission, we encourage you to get involved. Consider joining a committee, or let us know if you have a specific skill set and are willing to volunteer your time. But most importantly, just stay connected in whatever way works best for you – read our emails, follow us on social media and/or join our meetups and webinars.

Our passionate Board of Directors has historically driven the bulk of the fundraising for our organization. While our team remains dedicated to the cause, there is no question that in order to expand our research objectives, we desperately need more families to help drive fundraising. We cannot continue to make an impact without more support.

If supporting research and creating additional Centers of Excellence is important to you, please consider helping us fundraise. We’re happy to brainstorm with you – just reach out to fundraising@grin2b.com.

Please read our list of 2022 accomplishments below and let us know if you have any questions. We look forward to a bright and busy 2023!

With hope,

Liz Marfia-Ash, GRIN2B Foundation Board President

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2022 Year In Review

Operational & Administrative

• Raised $145,903 in income.
• Celebrated our 5 year anniversary in June 2022.
• Hosted GRIN2B Community Update Webinar in November.
• Shared our 2nd Community Pulse Survey in December.

 

 

 

 

 

 

 

 

Support

• Hosted GRIN2B Family Weekend in July with 25 GRIN2B families and 100+ attendees.
• Launched Bee Connected Meetups for families to connect and learn about resources.
• Private parent support group grew from 646 to 723 members, representing 50 countries.
• 103 families completed our family registry on our website.
• Coordinated resources and helped rescue a GRIN2B family out of Ukraine.
• Provided 4 Travel Stipends for families attending our GRIN2B Family Weekend.
• Provided 2 Patient Assistance Grants.
• Sent 1 Comfort Care Item to a hospitalized child.
• Wrote support letters for 2 families to help them obtain regional services.
• Provided guidance to families re: signing up for registries and accessing the GRIN Portal.
• Family Advisory Committee began working on a Welcome Booklet for new families.

 

“Our son Alex is 15 and has refractory epilepsy that is resistant to treatment. We decided to seek help from the Neurology team at BC Children’s Hospital in Vancouver. We applied for a Patient Assistance Grant to help us with the costs associated with traveling. We have been so grateful for all the support and guidance we have received from the GRIN2B Foundation.” – The Caleb Family

“I am sincerely grateful to all of you for your help and support. Thanks to GRIN2B Foundation and everyone who cares, we are alive and well. In a difficult period when Russia came to kill and torture in our home, GRIN2B Foundation came to our rescue. The whole family was rescued and supported, evacuated to a safe place. With the financial support, we were able to buy food and medicine and survive a difficult period in Poland.” – Nadezhda Bilous, Ukrainian GRIN2B Mom 

 

Awareness 

• 19 teams from 3 countries participated in our 3rd Annual Bee Active for GRIN2B Walk, Run & Roll, raising $46k.
• March Awareness Week campaign: profiled 22 patients, shared 2 symptoms videos and shared graphics with facts & resources.
• Created a new Awareness Video during March.
• 2300+ followers on our public Facebook page. 
• GRIN Therapeutics produced a series of videos featuring our community during the GRIN2B Family Weekend. 
• Created and sold our 2023 GRIN2B Calendar.
• Started fundraising partnerships with Billy Footwear and See’s Candies. 

Research & Medical

• Signed contract with Children’s Hospital Colorado to develop the 1st North American Center of Excellence for GRI-gene Disorders.
• Awarded $25k to the Stephen Traynelis Lab at Emory University to advance their translational work with GRIN2B variants and animal models that are directed toward assessing potential therapeutic strategies.

  

• 4 stem cell lines for GRIN2B patients generated for research through partnership with Simons Searchlight.
• Collected 5 blood samples from GRIN2B patients for our biorepository through Combined Brain.
• Dr. Caitlin Hudac continued her EEG BioGene study, seeing patients at the GRIN2B Family Weekend.
• Visited and gave feedback on GRIN Therapeutic’s first U.S. clinical trial site.
• Continued to work with GRIN Therapeutics on outreach and feedback on their upcoming Radiprodil clinical trial, including drafting a letter of support for the FDA.
• Helped identify and recruit families for Duke University’s Orca Study.
• Presented to Duke University about GRIN2B.

 

A note about research. Sometimes people ask us why we aren’t further along in treating GRIN2B. Why aren’t we supporting either more research or specific types of research?

The fact is, it takes a LOT of money, time, understanding, safety and efficacy. It also takes a lot of bio specimens, patient participation and clinical trials. It takes a lot of collaboration with our Medical Advisory Board. While we believe Parents are important for driving research, it is still critical to rely on experts for guidance. And the truth is that wanting to fund more research simply isn’t enough. The members of our Medical Advisory Board have a diverse background and many of them are considered to be the foremost experts on GRIN disorders and NMDA receptors. 

We would fund dozens of research projects a year if our budget allowed for it. Most scientific research is funded through a combination of government grants, companies doing research development and non-profit foundations. In rare diseases it takes a lot of time to find and apply for these opportunities, as well as a lot of research and expertise to get the ball moving. We pride ourselves on our ability to make our funding choices very thoughtfully and carefully. 

GRIN2B Foundation has been able to support over $245,000 in GRIN2B research to date – and this amount is growing exponentially. Learn more about our funded research projects here – http://grin2b.com/awarded-grants/

If you are interested in learning more about the research process, we recommend you download the following toolkit from our partner, Global Genes – Rare Research Roadmap.

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On the horizon for 2023

• Finally launch Center of Excellence for GRI Disorders in Colorado, May 2023.
• Review results of our latest Community Pulse Survey.
• Celebrate GRIN2B Awareness Week, March 12-18.
• Sponsor and attend Cure GRIN conference in March.
• Develop our 1st Strategic Plan.
• Develop Corporate Sponsorship packet.
• Partner with Uplifting Athletes to co-fund a Young Investigator Grant for Dr. Riley Perszyk at Emory University.
• Finalize our Welcome Booklet for New Families and translate into several languages.
• Continue our Bee Connected Meetups.
• Plan various informational webinars.
• Begin early planning for the 2024 GRIN2B Family Weekend.
• Host 4th Bee Active for GRIN2B Walk, Run & Roll Fundraiser in September 2023.
• 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.

Get Involved!

• Join a Committee.
• Parents only – complete our Community Pulse Survey by Jan 31st!
• Make a donation. 
• Become a Corporate Sponsor. Email fundraising@grin2b.com.
• Fundraise for us! So many people ask us about funding more research or additional Centers of Excellence, but we cannot do this without increased fundraising from our community.
• Follow us on Facebook, Instagram and Twitter.
• Join our Family Registry.
• Keep a look out for announcements about upcoming webinars and meetups!

General inquiries – liz.marfia-ash@grin2b.com

Center of Excellence – donna.dunn@grin2b.com

Family Support / Patient Grants – brittaney.crider@grin2b.com

Family Advisory Committee – lauren.hookings@grin2b.com

Fundraising – fundraising@grin2b.com