7 reasons #SmartDonors fight SYNGAP1 via SRF

  1. LASER FOCUS ON SCIENCE
  2. ZERO OVERHEAD: EVERY PENNY YOU DONATE GOES TO SCIENCE
  3. FOUNDING MEMBER OF THE GLOBAL SYNGAP NETWORK
  4. FULL-TIME DEDICATED MANAGEMENT
  5. SAB IS AN ENGAGED TEAM OF TOP-SHELF SCIENTIFIC ADVISORS
  6. A PARENT TEAM OF DOCTORS & SCIENTISTS
  7. SMART PORTFOLIO APPROACH
  1. SRF HAS A LASER FOCUS ON SCIENCE
    SRF was created to accelerate the science — it is why we exist. SRF wrote & funded three grants in the year it was created. Read the blogs (Ashley’s article on a cure is a good start) and review the webinars, this organization is focused. As of now, SRF has granted over $1,000,000 to scientists. Not bad for a 2 1/2 year old organization.
  2. SRF IS ZERO OVERHEAD: EVERY PENNY YOU DONATE TO SRF GOES TO SCIENCE
    Organizations have expenses. Websites. Accountants. Lawyers. Printing. Mailing. Travel. etc. Whenever you give to an organization it’s important to understand how much money is “feeding the beast” of the org and how much is doing something you care about. Since the founders initially conceived SRF as an aggregator of funds for research, the founders decided this number should be as low as possible: they designed a lean virtual organization run by parent volunteers with very low costs. They then set aside funds to cover all the operating costs of SRF, so that every donor could be sure, 100% of funds entrusted to SRF will go to a lab or research project.
  3. SRF IS A FOUNDING MEMBER OF THE GLOBAL SYNGAP NETWORK
    SRF a founding member (and the only American member) organization of Syngap Global Network (SGN). This global consortium of Syngap organizations are constantly collaborating to achieve common goals. SGN collectively tracks and prioritizes all research projects to both ensure no duplicative efforts & to identify all opportunities for collaboration.
  4. SRF HAS FULL-TIME DEDICATED MANAGEMENT WORKING WITH PROFESSIONAL PARENTS
    Our founder left his job at the start of 2020 to run SRF full time as the managing director. This is good news for SRF since Mike’s path has been a strong preparation for running a rare disease organization. Mike’s experience in healthcare as a consultant, in grant making at major institutions, as well as other roles where had to meet constant challenges all inform how he pushes SRF forward every day. That skill set is valuable and free for SRF.
    In addition the board of SRF is composed of strictly parents who represent a dozen SynGAP families. These Directors of SRF all volunteer their time to ensure SRF stays focused on making progress with science for our kids.
  5. SRF SAB IS AN ENGAGED TEAM OF TOP-SHELF SCIENTIFIC ADVISORS
    The scientific advisory board of SRF is a carefully curated and intentionally small group of remarkable scientists. We don’t know where the next breakthrough will be nor what specific technology will drive it. But when the question arrives, this SAB has the knowledge and network to make sure SRF gets a good answer.
  6. SRF HAS A PARENT TEAM OF DOCTORS & SCIENTISTS
    In addition to the SAB and constant engagement with biotech & pharma, SRF has built a team of parents who all have advanced training in medicine or science. The SRF MedSci team has three MDs, three doctorates, a veterinarian & some nurses who meet every month and pour through the research through the lens of a parent. This team is exactly who you want to be working with the scientists we are funding.
  7. SRF TAKES A SMART PORTFOLIO APPROACH
    There are multiple paths to treatment for genetic conditions like Syngap: small molecules, antisense oligonucleotides (ASOs), AAVs (gene editing), etc. SRF has strategically diversified their investments across multiple labs pursuing multiple techniques (nearly $1M to-date) to allow for the highest likelihood of identifying novel therapies to serve a broad patient population.
    Smarter still, SRF realized that with all the research they are tracking, it wasn’t clear who would get out of the lab and into the clinic faster. But they will all need to complete clinical trails to get there. This is why SRF has made a meaningful investment in building a digital natural history study in partnership with ciitizen — this data will help whomever decides to do a clinical trail move faster. All parents should sign up for ciitizen (click here http://ciitizen.com/syngap1) , we are lucky to have it.

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SynGAP Research Fund Updates

SynGAP Research Fund Updates

SynGAPResearchFund.com (est. 2018) improves the quality of life of #SynGAP patients via research & development of treatments, therapies & support systems.