FUNDING RESOURCES FOR PROFESSIONALS

Thanks to donors from all over the world, the FamilieSCN2A Foundation is able to help fund research to better understand SCN2A, find effective treatments and work toward finding a cure! We are excited to be able to award grants toward research and provide information on other grant programs available.

The FamilieSCN2A Hodgkin-Huxley Research Grant

The FamilieSCN2A Hodgkin-Huxley Grant program was created to honor the achievements of Dr. Alan Hodgkin and Dr. Andrew Huxley and their innovative modeling of action potentials, as well as their contributions which laid the groundwork for neuroscience research on the molecular, cellular, and circuit levels.

Unsolicited, year-round LOIs accepted. Full application invitations on a rolling basis as long as funds are available.

 Funded Research

The FamilieSCN2A Action Potential Grant

Through our investigator-initiated grant program, the FamilieSCN2A Foundation hopes to accelerate the development of therapeutic treatments and disease-modifying advancements for those living with changes in the SCN2A gene. This grant program is designed to facilitate preliminary investigations that will potentially lay the groundwork for subsequent grants from the government, industry, or other funding sources, including the FamilieSCN2A Foundation.

The FamilieSCN2A Foundation is interested in supporting research that advances understanding of the cellular, molecular, genetic and systems-level mechanisms of SCN2A-related disorders. However, priority will be given to innovative projects which could potentially lead to therapeutic treatments or a cure for those with SCN2A-related disorders.

A maximum of 10% indirect costs (IDC) can be requested. The total amount requested, inclusive of IDC, cannot exceed $75,000.00.

 Funded Research  Learn More

Orphan Disease Center - Million Dollar Bike Ride Pilot Grant

Request for Applications (RFA) is broadly distributed to the international scientific community requesting pilot grant proposals to study the diseases represented in the MDBR. The ODC secures philanthropic donations that are used to match, dollar‐for‐dollar, the funds raised by our cyclists. The scientific leadership of the ODC and its extramural advisors review the applications and grant awards to those of the highest scientific merit which address the specific topics outlined in the RFA. The ODC will disperse the money to grantees and manage the progress of the science and spending on the award.

 Learn More    Funded Research

JUNIOR INVESTIGATOR RESEARCH AWARD

A full research grant will be funded by the FamilieSCN2A Foundation. FamilieSCN2A hopes to accelerate the development of therapeutic treatments and disease-modifying advancements for those living with changes in the SCN2A gene. Learn more at www.aesnet.org/research-funding/funding/early-career.

 Application Guidlines    Funded Research

Our Requests for applications (RFAs) serve a critical function in helping us fulfill Charles A. King Trust’s mission (to “support and promote the investigation of human disease and the alleviation of human suffering through improved treatment”.) These open calls for scientific proposals are Charles A. King Trust’s opportunity to consider some of the SCN2A research community’s most creative and impactful ideas.

 Learn More

Our requests for applications (RFAs) serve a critical function in helping us fulfill SFARI’s mission (“to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance”). These open calls for scientific proposals are SFARI’s opportunity to consider some of the research community’s most creative and impactful ideas.

 Application for SFARI Grants

The Whitehall Foundation aims to support scholarly research in the life sciences that is not heavily supported by federal agencies or other foundations with specialized missions. The foundation is focused on supporting young scientists at the beginning of their careers and productive senior scientists who wish to move into new fields of interest. The foundation invites LOIs for two grant programs:

Research: Grants of up to $100,000 per year for two to three years will be awarded to established scientists working at accredited institutions in the United States. Grants will only be awarded to investigators who have received or expect to receive substantial support from other sources, even if it is for an unrelated purpose.

Grants-in-Aid: One-year grants of up to $30,000 will be awarded to researchers at the assistant professor level who experience difficulty in competing for research funds because they have not yet become firmly established. Grants-in-Aid can also be made to senior scientists.

 More Information

Announcing the 2023 Hodgkin-Huxley Awardees:

Kevin Bender

Bender Lab, UCSF

Yang Yang

Yang Lab, Purdue University

Rikke Steensbjerre Møller

Danish Epilepsy Centre, Filadelfia/University of Southern Denmark

Orphan Disease Center - Million Dollar Bike Ride Pilot Grant

2023 Awardee

Paul M. Jenkins, PhD

Assistant Professor, Department of Pharmacology and Psychiatry, University of Michigan Medical School

2022 Awardee

Samuel Young, Jr, PhD

Professor and Vice-Chair of Research, Department of Anatomy and Cell Biology, University of Iowa

Announcing the 2023 Action Potential Grant Awardee:

Michael Coulter, MD, PhD

UCSF / Loren Frank Lab

Iria Gonzalez-Dopeso Reyes / Ye-Eun Yoo

Kremer Lab, Institut de Génétique Moléculaire de Montpellier / Yang Lab, Purdue University

Past Recipients: Action Potential Grant Awardees

2022 Awardee

Yuliya Voskobiynyk / Vivianna Denittis

UCSF Gladstone Institute

Xiaoling Chen, Ph.D. & Jingliang Zhang, Ph.D.

Purdue University

Roy Ben-Shalom Ph.D., Assistant Professor

UC Davis MIND Institute / UC Davis Health Department of Neurology

Chenyu Wang, MS

UCSF / Bender Lab

Muriel Eaton

College of Pharmacy, Purdue University / Yang Lab

Eduardo Pérez-Palma, PhD

Genomic Medicine Institute, Cleveland Clinic / Chile

Sunita Misra, MD, PhD

Northwestern University / Lurie Children’s Hospital

Caitlin M. Hudac, Ph.D., Assistant Professor

Center for Youth Development and Intervention (CYDI)

Department of Psychology

Brain Research Across Development (B-RAD) Lab

The FamilieSCN2A Foundation works to create, and seeks to enhance a landscape that encourages investment in research by all stakeholders. This includes actively engaging and collaborating with pharmaceutical and biotech companies. The following requirements will help to ensure the highest level of ethical conduct is followed in the organization’s collaborations with these for-profit companies. The goal in engaging companies is to enable the development of therapies to meet patient needs while maintaining independence and neutrality as a patient organization.

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Company Engagement:

  • Board Members and members of the Scientific Advisory Committee will disclose any and all relationships with companies with whom the organization engages and will annually sign a statement agreeing to the organization’s Conflict of Interest Policy.
  • The organization will collaborate with companies, at its discretion and in consultation with its scientific advisors, which are conducting ethical, high-quality research in a responsible manner, according to industry and international regulatory standards.
  • The organization will actively seek the guidance and utilize the expertise of its Scientific Advisory Board throughout the process of working with each company.

Data Collection:
The FamilieSCN2A Foundation strongly advocates that all data about a family's medical history, genetic mutation, and all bio-specimens collected (DNA, cell lines, etc) should be in 'pre-competitive' space and should be freely available to any qualified researcher.

This practice helps to amass a large number of families with relevant medical information, which is critical to make progress on any rare disease. It is a strategy used by many other groups and is strongly endorsed by Simons VIP Connect (and made possible by their data platform). This ensures that any researcher with a good idea will be able to design experiments and potentially develop treatments. We are committed for the long term to make all de-identified data and samples available to the research community to make it easier for more scientists to work to find treatments for families. We strongly believe this arrangement is in the best interest of families and the entire SCN2A Community.

Patient Engagement:
To avoid any potential appearance of conflict of interest, Board Members, who have a fiduciary responsibility to the organization and direct the acceptance and use of funds provided by pharmaceutical companies, should not testify at regulatory hearings. Patients and members of the community with a connection to the pharmaceutical company, such as relatives of an employee or owners of stock in the company, should also not testify at hearings.

Financial Contributions:
The organization can accept donations from pharmaceutical companies; however, Board Members and staff may not receive honoraria to speak on behalf of the organization. Travel expenses incurred to participate in disease-awareness activities may be reimbursed directly to the individual or the organization.

Clinical Trial and Approved Therapy Communication:

  • The organization will disseminate accurate, fair and balanced information about clinical trials provided by a pharmaceutical or biotech company without additional commentary or opinion that may influence an individual’s decision to participate in a clinical trial or that may change the meaning of the information.
  • The organization does not communicate information in a manner that could be interpreted as advertising or promoting a drug or treatment that has not been approved.

The FamilieSCN2A Foundation recognizes the need for open lines of communication, connecting scientists, and forming partnerships with doctors, researchers, and patient organizations which help avoid duplication of efforts. We partner with organizations who share our priorities of finding effective treatments and a cure, and who share our integrity and values that support our mission. Global collaboration will get us closer to a cure of SCN2A related disorders.

Advocacy organizations, medical partners, industry or other parties interested in partnering with The FamilieSCN2A Foundation can contact Leah Schust, President and Founder, for more information.

Ways To Contribute

Whatever you decide, please let us know. We are here to support you with ideas, resources and more. Check out the FamilieSCN2A Fundraising Page on facebook to see how others have helped.

FUNdraising

FUNdraising is not only about money, it also raises public awareness of SCN2A and the issues around rare diseases in general.

Raise Awareness

Share your story with friends and family, in private and/or through social media. Share our website with them.

Donate

Make a tax deductible donation directly to the FamileSCN2A Foundation to be used for raising awareness, research and supporting families

Raise Funds

Sign up with iGive, an automated program that donate a portion of online sales to charity.

Have a Party!

There are many direct sales vendors who would be happy to do a fundraiser for you.

Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!