I am a bioinformatics researcher and have had a completely seamless experience working with this amazingly well-run non-profit. The scientific leadership at SRF is outstanding. The organization is run professionally with a clear code of conduct and NDA for volunteers that is easy to complete quickly. Highly recommend volunteering with SRF to better understand a single-gene disorder linked to autism, epilepsy, and intellectual disability that could have huge implications for the health of broader populations.
As the current Board Chair for SynGAP Research Fund (dba Cure SYNGAP1), I see firsthand how our passionate and dedicated community is actively working together to develop personal connections, fundraise for research, and lay the groundwork for future clinical trials. Together, we WILL improve the outlook for those suffering from a debilitating rare disease -- SYNGAP1.
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Joining the community of SynGAP Research Fund after seeking diagnostic answers in isolation for more than 10 years was the lifeline we needed. With SRF, our family has newfound hope and is focused on drug and gene therapy discovery. We have also developed cherished and priceless friendships, so no longer feel alone. This community is everything for SYNGAP1 families — I am so thankful to be involved with SRF.
SynGAP Research Fund is uniting the SYNGAP1 community through actions big and small to get new effective treatments for SYNGAP1-related disorder. The money spent here is always with maximal impact in mind.
One example of a thriving organization: there are SO MANY volunteers! SRF Volunteers lead with their hearts.
Another example of a thriving organization: The Board of Trustees work to make sure there are funds to spend, and that they help treatments, help the measures required for clinical trials, or help the community come together with biorepository samples, with their voices and their medical concerns for their loved ones, and with their shared experience.
My final example of a thriving organization: Over a dozen therapies are in the pipeline of treatment development. The number of Pharma and Biotech companies who are publicly and actively engaged with SRF is a testament to their power and success.
As a parent of a child with SYNGAP1, discovering the SynGAP Research Fund (SRF) has been nothing short of a blessing. From the very first moment we connected with this incredible organization, we felt seen, heard, and supported in ways that are hard to put into words. The unwavering commitment to raising awareness and funding for SYNGAP1 research is inspiring. It’s rare to find an organization that is so passionately involved with the community it serves, and SRF goes above and beyond in every aspect. SRF has become a true lifeline for us. Knowing that there are so many other families working alongside SRF to push for a cure gives us hope for the future. We are forever grateful for the hard work and dedication of everyone involved with the SRF, and we couldn’t imagine navigating this journey without them by our side.
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SRF has been the life line I was desperately searching for. Within a week of my son’s diagnosis I was sitting in a kitchen of another synap1 parent and learning all she knew about parenting a syngapian and what we had to look forward to in terms of the future. This organization is made up of syngap1 families all working together and pulling our resources together to pay for research in the search of a cure.
Since the diagnosis of my son, the SynGap Research Fund -SRF has giving me and my family hope. So much work and guidance has been providing. My family is so appreciative of everything that this fund does.
Picture a remarkable tribe of warriors - that's the Syngap Research Fund (SRF) community! Like a beacon of hope in the sometimes stormy seas of rare disease navigation, SRF has created an extraordinary tapestry of support, weaving together determined parents, brilliant scientists, and compassionate medical professionals. This isn't just any community; it's a powerhouse of love, knowledge, and resilience where seasoned parents become mentors, sharing their hard-won wisdom about managing complex medical needs, celebrating tiny victories, and finding joy in the journey. Through late-night Facebook messages, WhatsApp chats that buzz with encouragement, and virtual hugs that somehow feel just as warm as real ones, the SRF family transforms the overwhelming path of raising a child with SYNGAP1 into a shared adventure. Here, no question is too small, no victory too tiny to celebrate, and no challenge too big to tackle together. It's where tears of frustration meet tears of joy, and where 'you're not alone' isn't just a saying - it's a promise kept every single day.
SRF is such a blessing in the lives of our family. Our daughter was diagnosed at age 2. This organization gives us so much hope for her future and has allowed us to create a community of friends that are so supportive.
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SRF is an awesome organization! My grandson has Syngap1 and this organization and the many caring people that volunteer their time and energy have been a Godsend. They give us hope for new treatments and tirelessly advocate for all those afflicted with this rare disease. Without this organization we would literally be lost!
As a parent of a child diagnosed with SYNGAP1 three years ago, I know how overwhelming this journey can be. Uncertainty, lack of information, and countless unanswered questions became part of our daily life. Fortunately, we found the SRF Foundation, and it changed everything.
Thanks to their support, we were able to establish the right treatment and therapy tailored to our child's needs. Their knowledge, access to experts, and dedication to SYNGAP1 research gave us the reassurance that we are not alone in this fight.
SRF also helped us connect with other parents – amazing people who not only share their experiences but also become friends and a source of strength in difficult moments. This community provides the motivation to keep going.
Most importantly, SRF gives us hope – real hope, grounded in science and continuous research. Because of them, we truly believe that the future may bring a breakthrough in SYNGAP1 treatment.
If you are a parent of a child with SYNGAP1 and feel lost – the SRF Foundation is the place that will help you find your way. Thank you for everything! ❤️
SRF has been a great resource to our family to help us understand Syngap. My son was diagnosed 6 years ago at the age of 35 years old. I remember when I reached out to SRF, Mike Graglia responded to me immediately. I felt relief knowing that this gene mutation, although rare, had someone at the helm of research and support.
SRF is incredible! We have hope for the future and for our son with Syngap1 because of their hard work and passion. We are able to connect with other families and not feel alone. We know they are working around the clock for our kids and have already impacted our sons quality of life with their research. I can't imagine going through this without their help!
Syngap Research Fund has literally changed my daughter's life. Because of the community, support, research, advocacy, and information that SRF provides, my daughter has gone from being minimally verbal and struggling to speak to speaking 5 word sentences! We have gone from dwelling in despair to having hope for her future. If there is a cure, she has a chance at requiring less than constant support throughout her life. Currently there is an 86% likelihood of very difficult to treat seizures/epilepsy and most individuals with syngap1-related disorder suffer from that. We now have hope that that will change. Beyond all of that, SRF is excellent at providing full transparency of use of funds and providing information on how their work has made an impact. If you are reading this, I hope you will consider supporting this organization and people such as my daughter! Thank you SRF!
I have been following SynGAP Research Fund (SRF) dba Cure SYNGAP1 for many years, volunteering with the organization for the past 3+ years. I do this on behalf of my 8-year-old grandson, Cole and his family. SRF's commitment to those living with SYNGAP1-related disorders (SRD) is exceptional. It starts with engagement with newly diagnosed families by any number of SRF's volunteers, State Ambassadors, and Advocates.
When Cole was diagnosed in 2019 with SRD, there was little known about the disorder and minimal research performed to date. That has changed significantly in the past six years, and SRF had led the way. SRF has amassed countless resources for educating families of all backgrounds to become expert in this rare disease and makes it all available to anyone to find.
Finally, SRF has financed over $6.2M in grants to pave the road to a cure. They support and encourage participation in a variety of studies every year to prepare for clinical trials, which are necessary before any cure is approved by the FDA.
This is all accomplished with passion and compassion, expediency and patience, by some of the most intelligent and resourceful people I have ever met. This is a worthy non-profit organization, not only for purposes of donations, but also volunteering and supporting in any way possible. I intend to do so until we find that elusive cure. For more information about SRF, I encourage you to visit https://cureSYNGAP1.org and https://cureSYNGAP1.org/Impact
SyngapRF 03/10/2025
Thank you Ed, your leadership in Comms has made sure we touch so many lives. SRF will improve Cole's future.
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The more people within the SRF organization I meet and "work" with, the more impressed I become with the organization - because SRF is its volunteers, scientists, extended families, and other rare disease organization leaders. I am excited about the changes implemented during 2023 to keep pace with activity in the scientific world. SRF is ready for the future, pursuing all opportunities for a cure, and everyone is working together toward this goal.
SRF is amazing organization, as a parent of a child diagnosed with Syngap1 in 2019, I felt connected and supported by Syngap1 community. Now, I am proud to be part as a volunteer in this organization. SRF provide invaluable kind of resources to the families to navigate with this rare disease Syngap1, like webinars, family meetings, podcasts, medical resources and more. SRF is leading the way to find a cure or effective treatment that will bring a better future for our love ones. I just can say good things about SRF because it is a community devoted to helping.
We are so thankful for the tireless efforts of SRF! They continually go above and beyond reaching out to families, furthering research and raising awareness for Syngap1. We love the community they have created for Syngap families!
SRF is an amazing organization, a home to familles of syngap1 related distorters, our hope for better future. Its leaders are honest, transparent and very hard working individuals.
SynGAP Research Fund is accelerating treatments and bringing the SynGAP patient community together. From the informative webinars to the weekly family meetings; from the grants given for specific research projects to the participation in umbrella organizations like COMBINEDBrain and Rare Epilepsy Network, the SRF team is committed to alleviate suffering of their kids affected by a rare disorder called SYNGAP1-Related Disorder (among other similar-sounding names, like SYNGAP1-Related Intellectual Disability, SYNGAP1-Related Developmental and Epileptic Encephalopathy, and even SYNGAP1-Syndrome (ICD-11).
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This is the hardest working, most effective rare disease organization. SRF is making strides by supporting researchers, by connecting families, and by working hard day and night. From the identification of people with Syngap1 disorders to developing treatments and cures, from basic research to clinical endpoints, from connecting researchers to being a listening ear for families, from fun fundraisers to important informational webinars, the Syngap Research Fund is moving mountains to improve the lives of people and families affected by a faulty Syngap1 gene. Over $2M granted already. The volunteers in this organization cooperate for a better future.
My son was diagnosed last year and this group has given our family so much insight into the disease.
I’ve connected with different families and gotten unmatched support that you can’t get in your community.
As a parent of a child diagnosed with Syngap1 and a volunteer leader within the Syngap Research Fund (SRF), I can confidently attest to the remarkable impact this organization has on families like mine.
From the moment of diagnosis in 2021, SRF stood as a pillar of support, extending a compassionate hand and providing invaluable resources to navigate the complexities of Syngap1. Their proactive outreach marked the beginning of an enduring partnership built on solidarity and shared determination.
What sets SRF apart is its unwavering commitment to fostering a sense of community among families, researchers, and advocates. Through collaborative efforts and collective resolve, we strive together toward a common goal: advancing scientific understanding and ultimately finding a cure for Syngap1.
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Finding SRF has been one of the biggest blessings! They are well organized, strategic, and supportive. 100% of the donated funds go directly to research and they are doing the RIGHT research.... a multi-faceted approach to help our children/loved ones. Even though I lead an extremely busy life I started volunteering right away. They truly represent their values of
Collaboration/Transparency/Urgency
My Grandson was diagnosed with Syngap last year. Connecting with the SRF group has provided much needed support and guidance for me and my family. The work this team undertakes in an efffort to find a cure and provide support is truly inspiring and provides much needed hope!
My daughter was diagnosed with syngap almost 2 years ago and the day I joined their Facebook group Mike called me and I felt supported from there on. I can’t say enough great things about the Syngap research fund. They are always willing to support and help when needed.
Syngap Research Fund is the patient advocacy group that is a literal lifeline to me and many other families. As a scientist, I am embraced and encouraged to use my creative insights to move treatments forward for people living with Syngap1-Related Intellectual Disability and the full menu of physical, cognitive, behavioral, and medical challenges that come with it. As a parent, I am welcomed, celebrated, and comforted by the other parents through sharing our journeys. Top tier for people needing support, top tier for people wanting to help out, and all money raised goes toward therapies, research, and building a treasury of Health Information and BioSamples specific to this community.
SRF is an amazing organization. Led entirely by volunteers, parents and family of patients with a SynGAP1 diagnosis, SRF is making huge strides with all the work and dedication they have. They are working tirelessly and endlessly to get support, funds and awareness out in order to find a cure. Each person on the team is absolutely wonderful and hard working. They really feel like a family and are so dedicated to making the lives of their Syngapians better. My own family’s lives have improved since meeting SRF and becoming involved. We have been able to connect with so many families like ours and have gotten the opportunity to help others like us.
The Syngap Research Fund (SRF) is an excellent and collaborative organization run by a group of educated and caring family members who all share a common goal-to improve the lives of our loved ones. SRF spans the world. They are the lead that is driving forward research to find therapies and cures while also providng patient supports. I am proud to be part of SRF.
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SRF has been an amazing and most well run organization that has provided our Syngap1 family with support, guidance, resources and education. Members of the SRF immediately reached out after our almost 65 year old sister was diagnosed. They provided direction, collaboration and referred us to several resources including a Natural History Study. In addition, SRF has promoted “Caren’s Story “ in a short film so that others in the community can be enlightened. We feel so blessed by the support, direction and connections made through SRF and are excited about the direct impact and future possibilities their work will have on the Syngap1 community. We are so thankful!
SRF is an absolutely amazing organization, lead by dozens of Syngap parents and family members who have come together for a common goal. The Board and leaders do their due diligence to make sure they are good stewards of every penny that is donated and are fully transparent. I am proud to volunteer alongside each and every one of them.
SRF is a warm and welcoming organization that brings hope for treatment with its impressive funding of research.
Through the volunteers and great work of the Syngap Research Fund I have connected with so many parents and experts. I have come to understand the disease my son has so much better and be able to prepare and have hope for his future. Thank you for the tireless work you all do.
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Cannot express my thanks enough to the SynGAP Research Fund and all the volunteers that work for this charity. As a parent they have given my child and family hope for a cure. We have been able to educate ourselves to provider better care for our son. The work SRF does will certainly result in improving the quality of life for people living with Syngap1 syndrome. Thank you thank you thank you
My toddler daughter was diagnosed with SynGAP-1 in February 2023. Within days, I was able to connect with SRF and even met face to face with the organization’s managing director in order for our family to learn more about this disease and begin to build a network of support. Since then, we have found a community dedicated to fundraising directly for research into treatments; sharing information about studies that we can participate in; and providing daily support to families afflicted by this disease. I am so thankful for SRF.
SRF is steadfast in their mission to find a cure for SYNGAP1. Their patient and family support team has helped my family so much over the last 5 years. SRF really cares about all our affected children.
The SRF Board is made up of all Syngap1 families who are invested to make a difference. Our son has a missense mutation of the Syngap1 gene, only 20% of the pathogenic variants. SRF is committed to research for missense mutations to help bring structural and functional insights into variants of uncertain significance (VUS) classifications in hopes to increase the pathogenic variants. Driving science!
*Photo: Million Dollar Bike Ride SRF Team
As a dad with a daughter who has SYNGAP1 I am so impressed with the work SynGAP Research Fund is doing to advance science towards a cure. As a board member I get to see the inner workings of this foundation and cannot emphasize the commitment, professionalism and brilliance of the large team working behind the scenes. The achievements of this group in just a couple of years are staggering and are reflecting in real industry approach towards SYNGAP1 cures.
SRF is a fantastic example of what can be achieved by a small patient advocacy group in a short period of time and I cannot speak highly enough about this group.
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When my daughter was first diagnosed with Syngap I was devastated. However, as I started to research more, Syngap Research Fund quickly became a source of hope. This is an immaculately managed organization that is laser focused on finding a cure for this terrible condition. The commitment to transparency and urgency to find a cure is inspiring to me and to the wider parent community. When comparing SRF to other rare disease organizations, one cannot help but be impressed at the pace and breadth of what this organization is achieving.
As I have become more involved with the organization and found out more about how things are managed, I have only become more and more impressed; not just with the board but all the volunteers and everyone else who works tirelessly for a cure.
Wonderful organization laser focused on finding a treatment for Syngap1. Incredible group of parents and professionals collaborating to help all those affected by Syngap 1
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This amazing organization is funding leading edge science for complicated, sick children, youth, and adults. At the same time, it is caring for, educating, and walking alongside families affected by the rare genetic syndrome called SYNGAP1. It hasn't just created community for SYNGAP1 families; it also continually seeks to collaborate with others in the rare disease world. It uses its funds thoughtfully and well.
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SRF is full of smart, dedicated people and generous donors, funding cutting-edge science that will lead to a cure for this disease that challenges whole families. I volunteer with this organization because I'm an auntie to a sweet young gal with SYNGAP1, and I want to see a treatment for her. SRF uses funds efficiently and effectively. It has also created an amazing global community of families affected by SYNGAP1.
SynGAP Research Fund is the real deal, doing real work that will significantly accelerate the timeline for bringing SYNGAP1 therapeutics from bench to bedside. Donors can be confident that 100% of their donation will go directly to SYNGAP1 research, as SRF's founders cover all overhead costs. Smart donors support SRF!
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I was originally drawn to Syngap Research Fund after coming across their mantra: Collaboration. Transparency. Urgency. I knew that it was intentional and that the organization was true to their mission of accelerating the path to therapeutics for patients suffering from Syngap1. SRF has funded ~$1M in research to-date, and their founders cover all overheads, so 100% of all donations go directly to science. This team is really making a difference!
SRF has made such a positive impact on our lives since our daughter's diagnosis almost a year ago. They have connected us to a network of people ready to engage and help, and they have also given us a feeling of hope in what the future of Science and Medicine may hold for our Syngap children. Thank you SRF!
SRF and the SRF community has truly been such an incredible resource to our family and the glue that has held us up on some of our absolute hardest days. The founders are willing to have a conversation with families anytime of day, a wealth of information and completely transparent. They have poured their lives into finding a cure for our children and we could not be more grateful for their incredibly hard work. This organization is making such a difference but also bringing families together, making sure we all know that we aren’t alone.
I was introduced to SynGAP late last year and had the pleasure of working with their team on a technology project. What I learned was not only the tremendous value their work provides to families across the country, but also how passionate everyone is that's involved in the leadership of the organization. The amount of time these dedicated volunteers give to SRF is inspiring. Additionally, they're really passionate about making sure every dollar donated is leveraged to maximize their programs and services. You can see that their motivation to help SynGAPians is at the heart of everything they do and drives their decisions-making.
I'm really not sure where we would be without the dedicated and ever questioning team at SRF. It's amazing how far we've come in such a short space of time, across multiple fields of research, without a dollar/pound/euro wasted. My sons life will change faster, I'm in no doubt of that.
I have volunteered with Syngap Research Fund for the last two years- sitting on the Board of Directors in 2020 and helping out with various projects. SRF is a reputable, transparent non-profit whose founders cover all overhead costs. This volunteer organization puts all donated funds directly toward funding science studying the disease in order to find a treatment or cure for the 1000+ diagnosed and all the patients to be diagnosed. I will continue to support SRF!
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SYngap Research Fund is a first rate organization with a well-rounded and driven team of parents working toward their goal: finding a treatment for Syngap1. One of the most striking things about SRF is its motto: collaboration. transparency. urgency. These aren’t just nice words- the folks at SRF work and live by these core foundations and it shows. The hope and support SRF offers its patients/families is outstanding!
SynGAP Research Fund tirelessly is working to cure our affected children. The leadership team and volunteers are some of the most dedicated people I’ve ever seen. I really think it’s possible in our lifetime to cure Syngap1!
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Syngap Reaearch Fund is doing everything they can to help people affected by Syngap1 genetic disorder. Their hearts are completely in the best place.
This nonprofit drives research and drug development efficiently. It covers all basis in getting therapies to our kids. Their motto “time is brain” can’t be more fitting. The founder knows very well how to run an organization and they cover all overhead so every donor dollar goes directly to research! This organization give me hope that my little girl will be able to do things she loves and speak her mind one day
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This is the best non-profit group made up from parents volunteers. There are so much work behind the scene to fight for kids with a rare disease to accelerate treatment and to connect the entire community together to support one another.
We would be so lost without this amazing community. They have given us so much guidance and hope through this unknown journey of having a child with Syngap.
This is by far the most amazing group of people who spend their time and resources to volunteer to bring therapies to their loved ones. Science plus hope will result in cure! Friday’s Syngap10 podcast is a highlight of my week.
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Over 50 volunteers working in multiple countries with other groups, a growing number of researchers and over $2M raised for research. This group is working so hard to improve the futures of their loved ones. It is such a privilege to work with this team.
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They just keep going, love the addition of the podcast this year to engage and communicate, talk about a commitment to transparency. This group is doing a great job of serving the SYNGAP1 community.
There aren't many positives of having Syngap1 Syndrome, but having the SRF driving our community forward with such passion and drive is a massive positive - as well as being incredibly comforting and inspiring.
Our son was diagnosed 3 years ago aged 9 and each week we are filled with hope and positivity from the fearless work from the SRF. Thankyou for all you do.
After our son was diagnosed with SynGAP in 2018 at the age of 16, we began searching for a community of families we could relate to. We always knew there was more to our son Andrew's story, and SynGAP filled in the "gaps" we had been living with for so long. SynGAP Research Fund became a source of hope, action, and purpose, and the people who make this non-profit so remarkable are an amazing group of parents, professionals and advocates determined to find treatments and ultimately a cure for our loved ones. We are so grateful for the tireless work of SRF and feel so lucky to be part of this organization.
As a donor, aunt of a niece with a syngap1 diagnosis, and now an SRF board member, I'm most impressed with two things about this non-profit. First and foremost the support that the organization offers families of syngapians is amazing. Every decision made, and every dollar spent/granted is done with the hope of improving lives and ultimately finding a cure. Second, unlike may young non-profits, SRF stays on task. They have a mission statement and they stick to it. It's easy to be tempted to spread yourself too thin as many opportunities present themselves, but the SRF leadership, in conjuction with its' Scientific Advisory Board, manage to stay focused on things that help families immediately or could lead to a cure in the near future.
We love the support provided by SRF! They are always there to answer questions and are continually searching for treatments to improve the quality of life for our rare children.
One of best family lead charities. The board is compromised of family members that are affected by SynGap. All decisions are made with all the families in mind with the ultimate goal to find a cure or therapy to help those with SynGap.
Having a child diagnosed with a rare disease can be the most isolating feeling a parent can experience. SRF has been a source of support and hope for our family. It not only brings families with a SynGAP1 diagnosis together to learn from one another, but is pushing the timeline up for potential clinical trials to help treat our loved ones. My family would be lost without SRF.
The staff of this organization is 100% volunteer. Every penny donated goes directly to research. This research helps hundreds of children with this rare disease (Syngap1). Every day, more and more people (mostly children) are diagnosed with this disease through our emerging understanding of genetics. This organization is second to none with respect to the donations going directly into meaningful research.
Wonderful to see such rapid progress from Mike, Ashley and the volunteers of the SynGAP Research Fund. Our family is forever grateful.
We found this nonprofit when we received the life changing news of a SYNGAP1 diagnosis for my 3 year old daughter. Since then, we have found healing, comfort, and hope through what this organization is doing. I donate and I feel good about recommending that loved ones donate to this organization. A+.
Syngap Research Fund is continually searching for new ways to help all those affected by Syngap1. The founders keep everyone up to date with everything going on and are 100% the right people to be leading this organization. They are wonderful people fighting for the whole syngap community!
i cannot be thankful enough for SRF for the professional work, tireless efforts and inspiring attitude! Even from the US it fills our days, weeks and years with hope and good thoughts across the ocean in Estonia too.
I donate whenever i can and i have participated in different fundraisers to support SRF.
A fantastic charity that has provided tremendous support to my family. It is great how transparent they are regarding where donations go, to see directly the projects that they are funding. A great board of parents putting their professional skills to use.
The work done by the SynGAP Research Fund (SRF) is truly invaluable to families impacted by SynGAP1 syndrome and the research community at large. The SRF not only helps families to better understand SynGAP1 syndrome but also offers them a community to engage with other families and to stay on top of the latest developments and research for the condition. I am especially impressed by the involvement of the SRF's leadership team- the team is clearly committed to each and every family joining the organization and fosters an environment where open-communication and connection are encouraged.
This is an amazing not for profit run to support and promote research into SynGAP. The funding of this research is invaluable to provide support guidance and hope to the SynGAP community.
Our hearts to this community lead by tireless parents to enable scientific breakthroughs and better quality of life for their loved ones.
This is great, in supporting the research on Syngap disease gene, to help the Syngap patients. Will continuous time support
A non-profit you can trust with your whole heart. Amazing leadership for a great cause with no overhead. What more can you ask for?
SRF is phenomenal! I love how devoted they are to finding a treatment/cure for our favorite syngapians! I am blown away with this nonprofit organization and everything that they stand for. So thankful to have amazing individuals who have made it their life mission to helping our loved ones and their own!
SRF is a dedicated and passionate force for families affected by this rare disease. Thank you so much for the work you are doing!
In the few short years since this organization's inception, it has pushed forward at an incredible speed to help find answers and better treatments for patients with SynGAP. Their clear mission, determination, and collaborative spirit has already helped bring a great deal of focus to this rare disorder. They have funded over $1M in research, and done so in a systematic way that will help accelerate the pace to assure earlier diagnosis, comprehensive care management, and better treatment options.
These folks are both wholistic and effective in their mission. They fundraise with targeted goals aimed at driving research, they educate the public, and they have a very organized, personal, and caring touch when it comes to families. We are honestly so fortunate to have found them. Every special needs family should have this kind of space to focus their advocacy and find support!
Amazing leadership in a cutting edge field! Consistent reports make me feel secure that my donations are going to an amazing cause and managed well.
Mike Graglia with SynGAP Research Fund, Inc. is a champion for affected families and could not be more dedicated to accelerating research. The community is fortunate to have him.
Mike is a passionate leader - the Syngap community is lucky to have him. As a new foundation, we are benefitting from Mike's expertise. Thank you, Mike!
SRF is setting the standard for how patient communities can advance the research and awareness for their condition and help help treatments. Their commitment to transparency allows their example to literally be your playbook if you are also tackling the challenges of rare disease disabilities or epilepsy.
Very lucky to have this organization working on behalf of our kids. The teamwork and professionalism are fantastic. Looking forward to a long collaboration with SRF.
SRF has one of the best rare disease leadership teams in the space. They have a solid strategy, they can execute, and I have no doubt they fill find therapies for their children. I am constantly impressed by the quality of the scientists they work with, their ability to galvanize their parent community to common goals, and their optimism.
Simply put, a brilliant organization. Wisely investing funds in research that’ll help syngapians everywhere.
Honestly, SGN has been our number one support since finding out our sweet boy has a syngap mutation. The syngap community is a strong family orientated network where we feel safe and supported. We also feel we have a purpose and something we can do to help our son and other children who share his diagnose.
We love SGN and everyone we have connected with so far. We don't know what we would do without them... ������������
SRF have been an amazing support to me and my family dealing with life with a syngapian. They are incredibly generous with their knowledge and resources, always welcoming and excellent at facilitating connections across countries and cultures. Thank you SRF for all you do for our kids, it really does mean the world.
SRF is a highly regarded and respected nonprofit in the rare disease world, and the Syngap community is very fortunate to have such passionate and capable advocates on their side. Mike is exceptionally generous with sharing his knowledge and insights, not only within the Syngap community, but within the rare diseases community... Inspiring more people to do good and fight the good fight.
When our son was finally diagnosed with Syngap1 we were in a state of complete despair. Syngap1 is devastating to brain function and causes many other symptoms which, even individually are difficult to tackle. When you combine them all, it's overwhelming.
Syngap Research Fund has given us so much great advice which has massively improved both our young child's quality of life and also ours - as parents and also 24/7 caregivers.
In addition to that, weekly meetings of the SRF support group give strength to us all and remind us we are not alone. We share successes and failures, always learning from each other. Any time I reach out to them, they are quick to respond and always kind & caring.
SRF is run by parents of Syngapians and they really understand what we are going through.
Thank you so much SRF.
I raised my child for years not understanding why he is the way he is. Finally getting a syngap diagnosis and joking the SRF group made is world of difference. What they are doing and the support they give is so important.
My son was diagnosed with autism and mental delay at 3. For years I struggled with why he was not matching up with any child with the same diagnosis. He always has been fun, smart, social and loving. Also with issues like behavior, speech, muscles, motor skills, attention, epilepsy and many others. I was the only one who understood him and a full time care giver. I struggled to explain who he was and why. Then the syngap diagnosis came with a answer and many others who understood him and what I was going through. He is now 7 and making more progress then he ever has thanks to this group. I no longer feel alone and isolated. I do not know where I'd be without then or their research.
When my daughter was diagnosed with Syngap. SRF were the first to reach out to me. They have helped me in many ways and helped me connect with other families dealing with the same diagnosis. I can't thank them enough.
They are getting the good word out there about Syngap, they are going to find a treatment for these precious kids!
When my son was diagnosed with Syngap1 I had nowhere to turn. After finding this website I have hope that there are people working to help us.
What SynGAP Research Fund has accomplished in a short amount of time is beyond inspiring. Mike and Ashley are top notch leaders and powerful patient advocates. They have assembled an incredible team of scientific advisors and created a solid research roadmap. The work they are doing will benefit the broader epilepsy community and pave the way for other rare diseases.
When my child was diagnosed I received a call that same day from SRF leadership. It was incredible. When I was confused and scared they gave me detailed information on the path forward. When I was lost they welcomed me into the community and valued my partnership and efforts. What I have found is the leadership are thoughtful, collaborative and completely focused on seed-funding the projects that are most likely to result in filling gaps in scientific knowledge and getting closer to a treatment for our children. I am impressed how the leadership continue to build and grow relationships with existing and new researchers and institutions. Every board member and volunteer brings years of professional experience to the table to further the cause for our children.
SRF is working hard to collaborate with groups all over the world. It is a source of hope for children like mine. The contributors to this group are focused on results, and enhanced communication among the members in order to advance the science.
As a parent of a Syngap child, Syngap Research Fund has given me a renewed sense of hope that one day we will have a treatment for our kids. It has strengthened the Syngap community and offered a safe haven to many families.
What I am most thankful for is that SRF has given me a voice, an opportunity to get involved and work with other driven parents in making a difference in our kids lives.
In every program we put in place, we stay true to the organization's core values: Collaboration/Transparency/Urgency.
Desde hace mas de 5 meses colaboramos activamente con SRF el fondo de Investigación Syngap apoyando a familias con el mismo diagnóstico de habla hispana en USA y latinoamerica. Nos sentimos sumamente afortunados y orgullosos de poder trabajar junto a los fundadores y otras familias altamente comprometidas en la búsqueda de terapias que mejoren la calidad de nuestros hijos Syngap1 .
SRF ha logrado en tan solo dos años avances increíbles basados en su profesionalismo, transferencia y excelente relacionamiento con científicos e investigadores. Seguiremos apoyando firmemente la misión de SRF.
This nonprofit is, quite simply, a model of collaboration. They are head and shoulders above the rest when it comes to recruiting scientists and other collaborators, issuing grants, and moving forward towards a cure.
Professional parent led advocacy group. Not only focuses on the science and research but on the importance of family support as well as transparency. We are so fortunate to have this group leading the research for our community and our own two girls diagnosed with SYNGAP1.
Even if US based, Syngap Research Fund is actively sharing their work with the worldwide community. Being based in Switzerland, we can see the huge benefit for syngap1 organisations around the world but as well for parents which may not receive answers or support in their own country. Research, census, family sharing are few of the topic where SRF is paving the way. Thanks for the hard work and the visible positive outcome for all families.
Desde cuando empecé a colaborar con el Fondo de Investigación Syngap, de inmediato quedé impresionada con la filosofía de la organización: colaboración, urgencia y transparencia, lo cual es evidente en todas las acciones tomadas por este grupo. Adicionalmente, he sido testigo de la generosidad con el mas necesitado y la inclusión de todas las familias sin importar el origen. Todas las personas que trabajan en esta organización tienen una energía incansable, dedicación y sentido de pertenencia que permite avanzar rápidamente y alcanzar las metas y los objetivos de cada proyecto. Sin duda la estructura organizacional de SRF es admirable y hace que cualquier persona pueda colaborar sin importar su situación personal. Yo estoy segura de que esta organización va a mejorar la calidad de vida de mi hija y muchos pacientes con Syngap. Yo estoy muy agradecida por la oportunidad de trabajar con SRF.
Tho very brief to this world of SYNGAP. SRF has been a treasure chest of info for our situation. The owner of the foundation even called me an talked with me and gave support and information. This foundation has come so far and can’t wait to see where it goes for all of us.
Great response time. Professional letter and follow up to our questions. Looking forward to seeing them help more kids with Syngap.
I have been incredibly impressed with the Syngap Research Fund over the last two years. They warmly welcomed me, and continue to greatly appreciate any contributions I make to their group. I am a donor, a parent in the community, and a sometimes-contributor to their web site. As a donor, I can see exactly what the research projects are and specify where I want the money to go. As a parent, I have been put in contact with others who have become an important part of my support group. As a contributor, I feel heard and appreciated when I have a viewpoint to share with the community. They deserve your monetary contributions, to put toward accelerating the essential steps required to develop treatments and cures.
SRF is an amazing organization of dedicated board members and community of parents working TOGETHER for one common goal - to provide a better quality of life for our kids.
SynGAP Research Fund Founders are two of most hardworking, supportive and generous people I have had the privilege to work with. They cover all overhead of SRF allowing 100% of donations to go to scientific research.
I’m honored and blessed to be apart of this amazing community of like minded people.
Volunteering with SRF has been an amazing experience. Everyone is so driven to advance the well-being of families affected by SynGAP Related Intellectual Disability. Their passion and motivation is truly contagious. SRF's efforts in accelerating research, improving clinical experiences, changing policy, and spreading awareness are major areas they are targeting and have had much success. However, the most outstanding quality of SRF is their capacity to support families affected by SynGAP-ID and other neurodevelopmental disorders. The unity they have created amongst the SRF team, donors, and families is greatly inspiring. SRF is giving families the hope they need to stay strong and persevere through this medical odyssey.
SRF is an amazing non profit focused on the needs of the patients at hand. This non profit is completely volunteer driven. The hard work of Syngap Research Fund is unmatched as they are working tirelessly to find a treatment/cure for those affected by Syngap1.
The SRF team really is one of a kind! This entirely volunteer team is constantly questioning how can we learn more about SynGap, and how can we help our SynGap "Tribe" more? I have never me a group of individuals who work with a greater sense of urgency or transparency.
SynGAP Research Fund has been a bright light on a dark journey through our child's diagnosis with SynGAP1 disorder. The leadership and team belong to the one group of people on Earth who are most equipped to advocate for treatments: Parents! It's been amazing to see the dedication and commitment SRF has shown to move at lightning speed towards life-changing treatments for our kids.
Syngap Research Fund acts with transparency and integrity. They have given me renewed hope in the advancements that are being made daily for our children. SRF has offered so many in the community a safe space to share, to celebrate joys and challenges, and to receive and offer support to other families.
The entire board is made up of Syngap parents working collaboratively to enhance scientific research, awareness, and community. The benefit of this is that all decisions that are made by this expansive group are made with our children’s and families best interests in mind.
It is my pleasure to know and work with such an amazing group.
I am continuously impressed by SRF's efforts to meet their mission of propelling forward Syngap1 research through the collaboration, transparency and perhaps most importantly - urgency - of all involved! As someone who has worked in the non-profit industry for the past 10+ years, I have seldom experienced an organization that consists of individuals with so much commitment and dedication, and that is especially true of SRF's leadership (team) and the countless Syngap parents who contribute to this important work. The Syngap community is incredibly lucky to have you on the front lines of this work in the hopes that we will find a treatment (or cure!) for this terrible condition.
SRF is laser focused on helping those affected by SynGAP, a devastating neurodevelopmental disorder, through investment in innovative medical research and dedicated community building efforts.
I've be a part of SynGAP advocacy work for 5-years, hands down SRF has accomplished more in two years than others in 5 years. SRF is the largest parent led organization and most effective team for Syngap. Collaboration, SRF leads in their effectiveness to work across the rare disease space to maximize resources. Transparency, just look at SRFs financial records and you will a clear accounting of every dollar donated. Urgency, two-years nearly a $1M in funded research to "fill the gaps" to treatments.
SynGAP Research Fund gave my family a community to belong to and find strength and hope from after our son was diagnosed with a SYNGAP1 mutation causing several developmental delays and physical disabilities. I cannot thank those enough who work so hard to find scientists, clinicians and volunteers to investigate our disorder and work toward treatments for our children. SRF has been integral to putting together an amazing team of researchers, but also parents to provide insight and support during the times of great difficulty and challenges for our family. I am forever grateful to the wonderful members of this organization for helping our family navigate these choppy and uncertain waters ahead for our son and family. Thank you for ALL you do for ALL of our children.
SyngapRF 03/10/2025
Thank you for saying this, it means the world to us to know that we are improving the life of your daughter and your family.