CureGRIN Foundation

Families, do you need to find grants to help cover your medical needs? Connect is the largest sortable database of active medical grants, designed to help families find financial support for equipment, therapy, treatment, medical bills, home modifications, events, and much more. https://lnkd.in/gJ4Fc7si What sets Connect apart is their user-friendly sorting feature, allowing searches by location, diagnosis, and specific needs. This ensures users find exactly what they’re looking for with ease. Best of all, it’s completely free for families!

Remember when CureGRIN awarded a research grant of $200,000 to Dr. Maggie Kalev-Zylinska (University of Auckland, New Zealand) and Dr. Amy Ramsey (University of Toronto, Canada) to study biomarkers for GRIN disorder last year? We have an update on the progress of this project from Dr. Kalev-Zylinska! The goals of this ongoing project are to develop models of patient GRIN1 variants in blood cells, characterize blood cells in mice with GRIN1 patient variants, and screen for biomarkers. Exploring different types of biomarkers that can help doctors and researchers understand more about diagnosing GRIN and other GRI disorders and helping to determine if potential treatments result in measurable clinical improvements in patients is a priority for CureGRIN. Watch the video to learn more about the exciting findings thus far! https://bit.ly/3TRXwFz Thank you to our fundraisers and donors who made this research possible! Help us continue the fight for treatments and cures for GRI Disorders. Register today: https://bit.ly/3XbksAD

TODAY IS THE DAY!! It’s time for our biggest fundraiser of the year…and we need your help! Register today! https://lnkd.in/gv7j_gBt CureGRIN is recruiting 50 - 100 family fundraisers who will each try to raise between $1,000 and $20,000 from friends and family during this October’s Count Me In Campaign. Here’s how we’ll use those funds to achieve our goals: 🧑🔬 Helping scientists to prioritize and fund patient-centered GRI research. This includes funding research that lines up with patient priorities identified in the GRI Census and treatment priorities identified at the GRI Symposium. 💊 Partnering with pharmaceutical companies to develop treatments and cures for GRI Disorders. This includes the creation of our Guide to Developing Treatments and Cures for GRI Disorders and in-person meetings with key industry leaders. ⚕️ Advancing clinical-trial readiness across the global GRI Community. This includes the collection of biosamples and identifying family priorities through the GRI Census. 👪 Championing advocacy for people with GRI and their families to government, regulators and funding agencies. Examples include our push to get ICD codes for GRI Disorders, and our upcoming Listening Session with the US Food and Drug Administration. 🫶 Educating and connecting the global GRI community of patient families, researchers, clinicians and industry. This includes funding regional family meetups, developing an information packet for physicians, and planning for GRICON25. You don’t need to raise a lot to make a big difference in our search for treatments and cures. $50 will pay to house a cage of GRI research mice for a month. $90 will pay to collect blood from a GRI patient for research purposes. $175 will pay for a PhD student to spend a full day on cure-focused GRI research. $4,000 will pay to turn a patient’s blood into iPSC lines, which can be grown into Neurons or organoids (also known as mini-brains). $5,000 will pay to do functional analysis on a specific variant in a GRIA, GRIK or GRIN gene. If you haven't participated yet, this is your chance to join. #GRIN1 #GRIN2A #GRIN2B #GRIN2D #GRIN3A #GRIA1 #CountMeIn2024 #GRIA2 #GRIA3 #GRIA4 #GRIK1 #GRIK2 #GRIK5

This is such encouraging news for our community

I want to answer, in layman's terms, why we fundraise and the challenges of rare disease research. 1. Its a common misconception that once you receive a GRI Diagnosis, you will find a specialist and get treatment. This is unbelievably false. Doctors don't learn ANYTHING about rare diseases in medical school and even if they did, it would be incredibly brief as there are over 7,000 rare conditions. A rare disease is hard to diagnose and sometimes it can take 4-9 years to get that diagnosis. Out of that 7,000 only 500 conditions have an actual FDA approved treatment. A clinical trial, by the way, once we get to that point can take TEN YEARS from inception to treatment. None of this is overnight. 2. GRI Disorders are relatively newly discovered. Within the last 10 or so years. 10 years in rare disease research is infancy. While yes, we are finding new families each day, if we can't record them in our census or registries, they DO NOT exist for research purposes. Our patient population is tiny and developing a therapy is not financially feasible for a pharma company. The more families that can participate in the Census, the better chance we have at recruiting interested biotech. 3. Rare diseases are not research priorities for the government or funding institutions. They prioritize diseases that affect a larger amount of people. That leaves us. The parents. Raising money for a multitude of things to make our children's lives better and livable. Even when our child isn't alive to reap the benefits. CureGRIN Foundation x is tackling this and more. Creating the Census to increase our community’s chances for clinical trials and drug development. Developing a symposium of GRI researchers to fast track a treatment for every single GRI gene. Advocating on behalf of our kids so the government knows we exist and we won't give up. Connecting families around the world so they know they aren't alone in this journey. Plainly, if you want a treatment or clinical trial, we need your participation. Help us fundraise, join a volunteer group, fill out the census, attend a roundtable. Carter did not die in vain. Carter is the catalyst to re-shaping societies view on rare diseases and disability. ALL of our kids are.

📢📢September 2024 GRI Census Update! Register Today! https://lnkd.in/gd63Mh_V Your child counts. Make sure they are counted!

We’re honored to announce that we’ve been selected as a 2024 #RAREis Global Advocate Grant recipient by @Amgen’s #RAREis program. This recognition underscores our unwavering commitment to the GRI Disorders community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this #RAREisGrant, we’re motivated to hope to address the health inequities that exist in our global community by empowering and educating GRI families, ensuring that no matter their socioeconomic status, they will have equal access to knowledgeable medical professionals and accurate information about GRI disorders. We hope to provide our families with access to emerging treatments and the opportunity to participate in available clinical trials. By translating and connecting these families with resources that are relevant to their cultural needs, we can improve patient outcomes and overall health for our global GRI Community. Learn more here: https://bit.ly/3Z6sfSP

FDA announced a funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program, open until October 22, 2024, to help address unmet needs in rare neurodegenerative diseases for children & adults. Learn more about this program and how to apply: https://lnkd.in/eKUbPCgN

Fantastic read of Dr. Terry Jo Bichell of COMBINEDBrain. She is the epitome of resilience and her relentless efforts have propelled research for NDDs. SLC6A1 Connect is so grateful for you and proud to know you. Read up & share: https://lnkd.in/gWXCmj2P #Leadership #RareDisease #Visionary

Join us in Kansas City on Sat, Sept 28, right after Global Genes Week in Rare!