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2023 Year In Review

Dear GRIN2B Families, Friends and Supporters,

2023 was a memorable year full of exciting milestones. We opened the first North American Center of Excellence for GRI-Related Disorders at the Children’s Hospital Colorado. After working hard for several years to develop this idea, it felt so good to see the clinic finally open last May and start seeing patients. We are proud to support this endeavor and hope we can eventually fund additional Centers across the United States.

The first commercial clinical trial for GRIN2B patients began enrolling patients in Europe. As we wait on FDA approval in the United States, we will continue to advise Grin Therapeutics on their clinical trial design.

Our Board of Directors worked hard to create our first 5 year Strategic Plan. This process included in depth surveys completed by our board and community, as well as several lengthy planning meetings where we evaluated our programs and initiatives and shared our goals for moving our organization forward. We are slowly but surely working through our tactical action plan to make our Strategic Plan a reality. 

Though we didn’t host an in-person conference ourselves in 2023, we were able to attend numerous conferences and meetups within the larger GRI community and Rare Disease spaces. Through these events, we were able to have fruitful conversations with families, researchers, clinicians and industry professionals. We are grateful for all the collaborations that come from attending these events. We really are stronger when we all work together on the individual pieces of the bigger picture.

And in the midst of everything, we also experienced devastating losses in our community. These tragedies remind us that there is still so much work to do for our community members in unraveling the mystery of GRIN2B. We simply don’t have the luxury of sitting back and hoping someone else will do something. Our community is too small. It’s up to each of us to make a difference and help our loved ones with GRIN2B. 

You don’t have to do it all. Just pick one thing to focus on if that’s all you can do. Join a patient registry. Fundraise. Participate in research. Watch a webinar. Attend our July Family Weekend in Colorado. Join a Meetup. 

Above all, we strongly encourage you to participate in research. An engaged community that contributes to research is our surest path forward to achieving successful clinical trials. Simply put, we need more data in order to move the needle.

Please take the time to read through all of our highlights from 2023 and our plans for this year. We are here to support each and every one of you and are happy to answer any questions. 

As always, we are committed to providing support and education to our GRIN2B families, promoting awareness of this ultra-rare disorder and funding research. Our vision is a world where every family impacted with a GRIN2B diagnosis feels empowered and supported.

With hope,

Liz Marfia-Ash, GRIN2B Foundation Board President

2023 Year In Review

Operational & Administrative 

  • Raised $203,508 in income.
  • Gathered data from two community surveys.
  • Developed our first Five Year Strategic Plan.
  • Developed a Corporate Sponsorship packet.
  • Began planning for 2024 Family Weekend Conference.

 

 

 

Support 

  • Private parent support group grew from 723 to 809 members, representing 52 countries.
  • 104 families completed our family registry on our website.

  • Continued our Bee Connected Meetups for families to connect and learn about resources.
  • Provided 7 Patient Assistance Grants.
  • Sent 3 Comfort Care Items to hospitalized patients.
  • Continued to support the GRIN2B family we rescued from Ukraine in 2022. 
  • Wrote a support letter for a family to help them obtain regional services.
  • Provided guidance to families re: signing up for registries and accessing the GRIN Portal.
  • Continued to develop our Welcome Booklet for new families. (coming soon!)
  • Developed Registry Info Sheet. 
  • Partnered with Mejo, a medical journal app specifically geared towards rare disease families. 
  • Created Amazon Gift Guide, with curated gifts for GRIN2B children. 

 

“The financial support provided has been instrumental in alleviating the burden of expenses associated with our son’s DMI (Dynamic Movement Intervention) intensive therapy. The impact of these intensives on Jack’s overall development has been remarkable. Thank you once again for your unwavering support” 

– Dianna, GRIN2B Mom, Patient Assistance Grant Recipient

 

Awareness 

  • 21 teams from 8 countries participated in our 4th Annual Bee Active for GRIN2B Walk, Run & Roll, raising $62k.
  • March Awareness Week campaign: profiled 18 patients, shared 2 symptoms videos and shared graphics with facts & resources.
  • Created a new Awareness Video during March.
  • Created a downloadable Awareness card for families.
  • 2700+ followers on our public Facebook page. 
  • Produced 1 new episode of Celebrating Rare: The GRIN2B Podcast.
  • Created and sold our 2024 GRIN2B Calendar.
  • Continued fundraising partnerships with Billy Footwear and See’s Candies. 
  • In lieu of Amazon Smile shutting down, we joined the Walmart Round Up program.

 

“This past May we visited the Center of Excellence at Children’s Hospital in Aurora. It was so nice to be able to walk into a place and not have to explain what genetic disorder our daughter had, they just knew everything, plus more! We walked away with more understanding and a sense of belonging to a whole community.” 

– Jelena, GRIN2B Mom

Research & Medical 

  • GRI Center of Excellence at Children’s Hospital Colorado began seeing patients in May.
  • Awarded $20k in research funding in partnership with Uplifting Athletes to Riley Perszyk at Emory University.
  • Hosted webinars on the Center of Excellence and Gain & Loss of Function Variants.
  • Shared research opportunities with community – Inchstones Project, GRI Faces Project, Combined Brain Biomarker project, Project Wellcast.
  • 3 blood samples from GRIN2B patients were added to our biorepository through Combined Brain.
  • Participated in ​​Simons Searchlight’s “Shine your Searchlight” campaign to encourage families to join their GRIN2B registry.
  • Added Dr. Scott Metrick, GRIN2B parent and retired Neurologist to our Medical Advisory Board.
  • Sponsored and spoke at Cure GRI Conference in Boston.
  • Sponsored and spoke at iGlur (Glutamate Receptor) Conference in Chicago.
  • Attended the National Organization for Rare Disorders Breakthrough Summit.
  • Joined Cure GRIN Foundation’s Research Grant Review Committee to determine future projects to fund.
  • Supported Cure GRIN’s application to the CDC for an ICD-10 code for GRI Disorders.
  • Continued to work with GRIN Therapeutics on outreach and feedback on their Honeycomb clinical trial.
  • Continued to work with Duke University on the next phase of their Orca Study.

GRIN2B Foundation has been able to support over $365,000 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.

On the horizon for 2024

  • Host our 2024 GRIN2B Family Weekend July 19-21 in Denver, Colorado.
  • Coordinate first Research Roundtable to develop our Strategic Research Priorities (July 19th, 2024).
  • Investigate new hospitals to partner with for GRI Center of Excellence sites.
  • Expand our Board of Directors, and develop a plan to hire our first staff member.
  • Celebrate GRIN2B Awareness Week, March 12-18. This year’s theme is “Bee Aware & Take Action.”
  • Re-open our Patient Assistance Grant Program in March.
  • Announce our next Research Grant award.
  • Continue to work with Duke University on Phase 2 of their Orca (communications) Study.
  • Work through our tactical action items from our Strategic Plan.
  • Develop a Volunteer packet.
  • Finalize our Welcome Booklet for New Families and translate into several languages.
  • Host more Bee Connected Meetups & informational webinars.
  • Host 5th Bee Active for GRIN2B Walk, Run & Roll Fundraiser in September 2024.
  • Continue to Collaborate with GRIN Therapeutics on the study design for their Honeycomb Trial.
  • Begin to engage with the FDA.
  • Continue to collaborate with GRIN clinicians, researchers and partner advocacy organizations.

Get Involved in 2024!

  • Join a Committee.
  • Attend our 2024 GRIN2B Family Weekend in Denver this July. Registration info coming soon.
  • 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 and Instagram.
  • Join our Family Registry.
  • Participate in research studies that are appropriate for your child/family.
  • Keep a look out for announcements about upcoming webinars and meetups!

 

General inquiries & Conference Planning – liz.marfia-ash@grin2b.com

Center of Excellence – donna.dunn@grin2b.com

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

Fundraising – fundraising@grin2b.com

 

GRIN2B Foundation Funds GRI Center of Excellence in Denver

GRIN2B Foundation is thrilled to launch the first North American GRI Center of Excellence at the Children’s Hospital Colorado. 

The GRI Center of Excellence will work to continually advance understanding of all GRI-gene Related Disorders (GRIA, GRID, GRIK & GRIN genes). Over time, our experts will research how these conditions unfold so they can develop standards of care for all those affected.

PURPOSE OF THE CENTER

This GRI Center of Excellence will help affected families access a team of multi-disciplinary specialists. The Center will ease the burden on families by bringing all the specialists together, instead of taking their affected loved one to multiple appointments. Children’s Hospital Colorado’s services include consultation and evaluation for individuals of all ages attending the clinic. Their expert providers will ensure patients are receiving the needed therapies, treatments, and services to support the best possible quality of life. Additionally, they will work to participate in natural history data collection and ground-breaking clinical research trials, as well as collaborating with providers across the country and the world. Children’s Colorado’s hope is to work with families and their primary medical team to create a care plan that places the patient’s needs at the center of care.

GRIN2B Foundation Vice President and Nurse Practitioner, Donna Dunn, has been integral in the development of this Center.  “We are so excited to be part of this GRI Center of Excellence. The GRIN2B Foundation has worked tirelessly for over two years to provide this service for our families. Patients attending this center will have access to state of the art care by healthcare providers in the field. I look forward to seeing this service grow and be able to serve more families. Thank you GRIN2B Foundation and Children’s of Colorado!” – Donna Dunn, GF Vice President

Dr. Park speaks at the 2022 GRIN2B Family Weekend

Our GRI Center of Excellence team is led by Pediatric Epileptologist, Dr. Kristen Park and Developmental Pediatrician, Dr. Jessica Sanders, and includes a Nurse Coordinator and Genetic Counselor. We will also have access to the full roster of care providers through the Neurogenetics Multidisciplinary Clinic at Children’s Hospital Colorado (this includes Physical Therapy, Occupational Therapy, Speech Therapy, Palliative Care, Social Work and more).

“This first-of-its-kind GRI Center of Excellence will allow us to accelerate our research, develop standards of care, and provide unparalleled comprehensive and holistic care for children with GRI disorders and their families. We are immensely grateful to the GRIN2B Foundation for their incredible partnership and support.” – GRI COE Director, Dr. Kristen Park

In 2023, the Denver GRI Center of Excellence will host two full clinic days – May 19th and November 17th. Starting in 2024, the Center will see patients 4 half days per year. To schedule an appointment, please contact the Center’s Nurse Coordinator, Ryleigh VandenBroeke at GRIClinic@childrenscolorado.org.

GET INVOLVED

GRIN2B Foundation will create a clinic advisory panel for interested GRI parents to be updated on clinic activities by the medical director. The panel will meet twice yearly and can make suggestions to the medical director who ultimately oversees the GRI COE. If you are a GRI parent interested in joining the panel, please contact donna.dunn@grin2b.com.

🌟 For more information, please join our upcoming webinar with clinic Director, Dr. Kristen Park.

INFORMATIONAL WEBINAR

Monday, March 6, 2023

5:00 pm MT | 6:00 pm CT | 7:00 pm ET | 4:00 pm PT

Register to join the ZOOM MEETING – https://bit.ly/GRI-COE-Webinar

🌟 Dr. Park will also be attending Cure GRIN Foundation’s GRI Conference in March and will be speaking on a panel about Centers of Excellence on Friday, 3/24.

While we work hard to promote research that develops treatments and cures for GRIN2B, we can do a great deal right now to enhance the quality of life for all those with GRIN2B and related GRI genetic disorders by funding this Center of Excellence in Colorado. 

GRIN2B Foundation hopes to fund future centers either on our own or in partnership with additional patient advocacy groups. Each Center requires several months or even years to establish, as there are numerous legal, ethical and financial considerations to arrange.

Consider making a DONATION today to help support the GRI Center of Excellence.

For general questions about the Center, please contact Nurse Coordinator Ryleigh VandenBroeke at GRIClinic@childrenscolorado.org or Donna Dunn at donna.dunn@grin2b.com.

The GRI Center of Excellence has partnered with the RARE Bear program, a grassroots community-driven outreach program for kids with rare disease. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids. Each patient who visits the GRI COE will be gifted with their own “Rare” Bear.