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2020 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

58 Stories from Volunteers, Donors & Supporters

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.

2

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.

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.

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.

1 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

2 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?

2

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!

2

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!

2

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.

2

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!

1

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.

1

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.

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!

2 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!

5

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.

2

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.

3

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.

5

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.

1

Donor

Rating: 5

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

1 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.

3

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.

4 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

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!

6

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.

4

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.

4 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.

5 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.

4 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.

2

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.

3

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

4

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.

2

General Member of the Public

Rating: 5

Wonderful leadership

Previous Stories
1

General Member of the Public

Rating: 1

Wonderful leadership

6 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.

6 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.

4

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.

2

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.

1

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.

8 Lauren P.5

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.

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.

6

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.

6

Volunteer

Rating: 5

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.

6

Volunteer

Rating: 5

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.

6

General Member of the Public

Rating: 5

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.

6

Volunteer

Rating: 5

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.

7 Rebecca L.9

Board Member

Rating: 5

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.

6 Caroline B.1

Volunteer

Rating: 5

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.

5 Ashley Evans G.

Donor

Rating: 5

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.

7 Peter H.2

Board Member

Rating: 5

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!

7 Aaron J H.

Board Member

Rating: 5

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.

6 JJ Vautier B.

Client Served

Rating: 5

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.

7 Mike G.4

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.