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2021 Top-Rated Nonprofit

SynGAP Research Fund, Inc.

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Nonprofit Overview

Causes: Autism, Birth Defects & Genetic Diseases, Disabilities, Epilepsy, Health

Mission: The mission of SRF is to improve the quality of life of SynGAP1 patients through the research and development of treatments, therapies and support systems.

Results: - SRF will have granted over $1m in research by the end of 2020 - SRF has over a dozen webinars available to families on our website. - SRF has an annual scientific roundtable, join us on December 4th, 2020: syngap.fund/RT2

Target demographics: SynGAP1 patients & their families through the research and development of treatments, therapies and support systems.

Geographic areas served: Our focus is the population in the USA but we collaborate globally.

Programs: - SRF has an annual scientific roundtable & webinar series. - SRF grants to labs to encourage research into Syngap. - SRF manages as global census of Syngap patients syngap.fund/census - SRF has a national ambassador program to support new families. - SRF has a weekly family support meeting online, Wednesdays at 5pm Pacific. Join us. bit.ly/SRFHH YNGAP1, our team of parents includes MDs, PhDs, a DVM & RNs.

Community Stories

78 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

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.

2 Mike G.4

Board Member

Rating: 5

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.

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Board Member

Rating: 5

This group is non-stop. There are a dozen families on the board and they are all working to raise both awareness of Syngap and funding for research. I am blown away by the team here. Also the founder cover all operating costs so 100% of donations go directly to labs. SRF is a place I am proud to support, work with and associate with. Their work on a digital natural history study in partnership with Ciitizen is particularly impressive.

2

Client Served

Rating: 5

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.

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Client Served

Rating: 5

SynGAP research fund is an amazing organization that places tremendous effort in changing the lives of children with SynGAP. After my child received her diagnose at 17 months, the organization reached out to me and helped me learn about SynGAP pointed me to many resources and research that they are funding to accelerate treatments. Although SynGAP is a relative new gene mutation that was just discovered as disease causing within the last decade. SRF was able to collaborate with a brilliant parents, clinicians, and researcher in a organized and financial sustainable manner that made me believe that the life of our children affected by this devastating neurodevelopmental disease will be greatly improved in the next decade I have a child with SynGAP. The journey has not been easy, but I have every reason to believe that it will get easier with the support of this organization

2 Joashline

Volunteer

Rating: 5

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.

2

Donor

Rating: 5

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.

1 sandy.smith317

Volunteer

Rating: 5

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.

2 Jini J.

General Member of the Public

Rating: 5

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.

1 Luis S.1

Donor

Rating: 5

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.

1

Volunteer

Rating: 5

This group is dedicated to moving forward treatments for people with a Syngap1 disorder. They connect researchers in academia and biotech, they support specific grants to move forward points that need clarity. They are currently working on measurable outcomes so that once the precision genetic treatments are ready to be tested, there will be meaningful ways to observe progress in our unique population. I'd give 10 starts if I could. The founders, the parent board, the scientific advisory board, all are truly top-notch. They are smart and caring and generous and hard working.

1

General Member of the Public

Rating: 5

Fantastic parent led charity. Great leadership great focus and great plan to help those affected by Syngap.

CBaysden

Volunteer

Rating: 5

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

2

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Donor

Rating: 5

Wonderful to see such rapid progress from Mike, Ashley and the volunteers of the SynGAP Research Fund. Our family is forever grateful.

2

Volunteer

Rating: 5

Mission driven volunteers that are making the future brighter for our loved ones.

2 Alexis E.2

Client Served

Rating: 5

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+.

2

Volunteer

Rating: 5

SRF was a life saver organization when we got syngap1 diagnosis for our 4 yo little girl. Not only they provided information and support but also opportunity to affect change and accelerate research for a cure. It’s a truly special and very inclusive organization with a great mission.

2

Client Served

Rating: 5

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!

2 Lauren P.5

Client Served

Rating: 5

Syngap Reaearch Fund is doing everything they can to help people affected by Syngap1 genetic disorder. Their hearts are completely in the best place.

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Volunteer

Rating: 5

Syngap Research Fund is an extremely supportive group of people working to help patients like my son who have Syngap1. Having their expertise and general kindness has made navigating our sometimes challenging lifestyle bearable and hopeful.

2 Maarja K.

Client Served

Rating: 5

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.

2 Laura D.7

Donor

Rating: 5

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.

3

General Member of the Public

Rating: 5

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.

2 Sara B.8

Donor

Rating: 5

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.

1 May Y.

Donor

Rating: 5

Our hearts to this community lead by tireless parents to enable scientific breakthroughs and better quality of life for their loved ones.

2 Gallie N.

Donor

Rating: 5

This is great, in supporting the research on Syngap disease gene, to help the Syngap patients. Will continuous time support

3 Christa F.

Donor

Rating: 5

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?

4

General Member of the Public

Rating: 5

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!

4

Donor

Rating: 5

SRF is a dedicated and passionate force for families affected by this rare disease. Thank you so much for the work you are doing!

4

Professional with expertise in this field

Rating: 5

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.

3

General Member of the Public

Rating: 5

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!

3

Donor

Rating: 5

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.

3

Volunteer

Rating: 5

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.

2

Professional with expertise in this field

Rating: 5

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!

3 Kessler2

Client Served

Rating: 5

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!

6

Professional with expertise in this field

Rating: 5

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.

4

Board Member

Rating: 5

Incredible organization super focused on getting the job done! Wonderful support for the Syngap community as a whole. Proud to be a part of this outstanding organization with great leadership, collaboration and transparency. Truly dedicated to the science in finding a treatment for Syngap.

4

Board Member

Rating: 5

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.

6

Professional with expertise in this field

Rating: 5

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.

2

Donor

Rating: 5

Simply put, a brilliant organization. Wisely investing funds in research that’ll help syngapians everywhere.

2 Chloe S.1

General Member of the Public

Rating: 5

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...

4

General Member of the Public

Rating: 5

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.

4

Professional with expertise in this field

Rating: 5

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.

6 themorrises

General Member of the Public

Rating: 5

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.

4

General Member of the Public

Rating: 5

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.

4 Peggy Pierce

Client Served

Rating: 5

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.

2

Donor

Rating: 5

They are getting the good word out there about Syngap, they are going to find a treatment for these precious kids!

2

Client Served

Rating: 5

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.

6

Volunteer

Rating: 5

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!

7

Professional with expertise in this field

Rating: 5

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.

5

Volunteer

Rating: 5

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.

5 Kimberly F.1

Client Served

Rating: 5

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.

6 Virginie Herrador M.

Board Member

Rating: 5

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.

6 Victoria A.3

Board Member

Rating: 5

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.

3

Professional with expertise in this field

Rating: 5

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.

5

Client Served

Rating: 5

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.

4

General Member of the Public

Rating: 5

Wonderful leadership

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General Member of the Public

Rating: 1

Wonderful leadership

8 Sebastien L.

General Member of the Public

Rating: 5

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.

8 Marta Caceres D.

Board Member

Rating: 5

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.

6

Volunteer

Rating: 5

This charity has been an amazing source of comfort, information and hope for our family and our son Bear, diagnosed with Syngap. What has been a difficult journey has been made so much easier because of SRF. More importantly we know that the path we have to walk will be made easier and future treatment be made available because of SRF. Literally will change my son’s life and give him a better future. Thank you for the bottom of our hearts.

4

General Member of the Public

Rating: 5

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.

2

Donor

Rating: 5

Great response time. Professional letter and follow up to our questions. Looking forward to seeing them help more kids with Syngap.

4 Janie R.

Donor

Rating: 5

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.

7

Board Member

Rating: 5

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.

7

Board Member

Rating: 5

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.