PLATINUM2024

Chelsea's Hope Lafora Children Research Fund

Creating Awareness, Connecting Families, Funding Research, Maintaining Hope

Sacramento, CA   |  https://chelseashope.org

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Mission

To improve the lives of those affected by Lafora Disease and help accelerate the development of treatments.

Ruling year info

2010

President of Chelsea's Hope Lafora Children Research Fund

Frank Harris PhD

Main address

P.O. Box 348626

Sacramento, CA 95834 USA

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EIN

27-1008382

NTEE code info

Epilepsy Research (H54)

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The problem we aim to address is improving outcomes for Lafora Disease. It is a rare neurodegenerative condition affecting one in 10 million children. Symptoms include epilepsy, ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating. There is currently no cure; the disease is always fatal. As the only U.S.-based patient advocacy organization for Lafora Disease, Chelsea's Hope began as a website in the fall of 2007 to share Chelsea Gerber's Lafora story with her family and friends. Chelsea was diagnosed with Lafora Disease in 2005 at 15 and lost her fight in December 2016 at 26. Today, our mission is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatment. We face other problems on the pathway to treatment, including: a small patient community; lack of sufficient funding for clinical trials; FDA approvals for clinical trials; and coordinating worldwide research & patient networks.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Annual Lafora Disease Science Symposium

The Symposium, formerly known as the International Lafora Epilepsy Workshop, is held every year, alternating between a location in the United States and an international location, typically in Europe. The event has been critically successful in bringing academic, clinical and pharmaceutical researchers, along with affected families and caregivers together and driving them to work in a collaborative way to find a cure for Lafora Disease.

Lafora disease is both a fatal childhood epilepsy and a glycogen storage disease caused by recessive mutations in either the Epilepsy progressive myoclonus 2A (EPM2A) or EPM2B genes. The collaboration between the Lafora patient community and researchers and clinicians is crucial in developing treatments. The 8th Annual Lafora Disease Science Symposium brought together nearly 100 people from October 9-10th, 2023, in Bologna, Italy. Since 2021, Chelsea's Hope has made virtual attendance or recordings of the event available for our worldwide community.

Population(s) Served
Academics
Families

Our quarterly, virtual Lafora Disease Research Roundtables bring the community together as we work towards our vision of a cure for Lafora disease. The Roundtables are a space for researchers, clinicians, industry partners, families, and allied rare disease organizations to share updates on current projects, and foster discussion and collaboration.

We began this virtual program in April 2023 and hosted the second in June 2023. These meetings are intended to lead up to our Annual Symposium. The Roundtables for 2024 will be on Thursday, February 8, April 11, and July 11 from 10:30 am - 12 pm EST. Zoom registration will be sent out one month in advance to our international community.

Population(s) Served
Academics
Academics
Families
Caregivers
Chronically ill people
Terminally ill people

The Chelsea’s Hope Sibling Support Group was created with the intention to provide emotional support and resources for siblings of Lafora Disease patients. The founder and leader of the group has two siblings with Lafora and wants to build community between siblings of those with the disease.

Learn more: https://chelseashope.org/wp-content/uploads/2023/09/SIBLING-SUPPORT-GROUP.pdf

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

Annual Lafora Disease Science Symposium

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

2019 - San Diego 2020/21 - Virtual only because of COVID-19 2022 - 65 in San Diego, 130 Zoom 2023 - 110 in Bologna, 90 Zoom

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatment. We envision a world where treatment options can accompany a Lafora Disease diagnosis. We aim to reach a cure and reduce the diagnostic odyssey that Lafora patients face. Chelsea's Hope raises awareness of Lafora, connects families worldwide, and brings together the research and patient communities.

As a Chan Zuckerberg Rare as One grantee, we have an opportunity to develop our organization's capacity to achieve our mission. Our goals are to:
- Strengthen the Chelsea's Hope organization.
- Grow and accelerate science objectives that further clinical treatments.
- Expand and maintain a strong, collaborative, and actionable research network.
- Empower the patient community and be an essential source and repository of information for families, clinicians, and researchers.

To accomplish our mission, we raise awareness about Lafora and the children it afflicts. Chelsea's Hope provides family connection and assistance through education, emotional support, and general assistance. Meanwhile, we work tirelessly behind the scenes with industry and research partners to help advance treatments.

To strengthen the Chelsea's Hope organization, we are creating sustainable procedures and developing our website and team to execute our mission best. We will seek to expand volunteer opportunities and our volunteer network.

To grow and accelerate science objectives that further clinical treatments, our Science Director works with industry, research, and organizational partners to pursue every path to a cure. One strategy to mitigate a small patient size is identifying more Lafora families through our continued partnership with Probably Genetic and the Broad Institute. We also seek to reduce the diagnostic odyssey of Lafora patients to improve outcomes.

Our strategies for expanding and maintaining a strong, collaborative, and actionable research network are to maintain close connections with researchers and labs worldwide. Continuing the Annual Lafora Disease Science Symposium remains a top priority for our organization. We also host quarterly virtual Research Roundtables to convene key research network and patient community members.

Chelsea's Hope plans to update our website to empower the patient community and be an essential source and repository of information for families, clinicians, and researchers. We will expand our resources for families and overhaul our scientific sections to serve better the Lafora clinicians and researchers we are connected with. A Director of Family Support, new as of 2023, will be the primary contact between Chelsea's Hope and Lafora families, guiding our strategy and support programs. New as of 2023 is a volunteer-led Sibling Support Group. We also connect with the Lafora community through social media and our monthly newsletter.

Chelsea's Hope is proud to be a Chan Zuckerberg Initiative Rare as One grantee through 2024.

We have a Board of Directors who volunteer to meet once a month and guide strategy. They are mostly Lafora patients' family members dedicated to reaching a cure.

There is also an active and diverse community of families and friends who support Chelsea's Hope through raising awareness, fundraising, and volunteering. They are committed to our cause.

Chelsea's Hope has four staff and is expanding our capabilities to meet our goals and strategy by hiring three interns for 2024:
1. Science communications - to help families affected by Lafora Disease better understand the latest research, create educational resources, and expand our website's science sections.
2. Research network development - to develop a database of current tools and resources for our scientific community that can be used to promote research collaboration.
3. Caregiver registry - to develop a Lafora caregiver registry and create the first questionnaire so we can better support families.

We are proud to be the first Lafora Disease advocacy group that brought together families from around the world. We also partner directly with biotech and industry partners to advance treatments.

So far, Chelsea's Hope has:
- Raised $5.5 million for Lafora Disease research since 2007.
- Hosted and co-hosted the annual international Lafora Disease Science Symposiums.
- Fostered the Lafora Disease Families Facebook group since 2020.
- Assisted with recruitment for a natural history study in 2019.
- Received a Chan Zuckerberg Initiative Rare As One grant.
- Received a 2022 #RAREis Global Advocate Grant from Horizon Therapeutics.
- Facilitated the Lafora Disease Research Roundtables since 2023.
- Received a 2023 Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA.
- Coordinated the application for ICD-10 Codes for Lafora Disease. Lafora Disease was awarded the unique code G40.C in 2023.
- Chelsea's Hope engages an audience of 2k+ through social media networking to connect with the community and raise awareness. Since 2007, we have shared patient and family stories on our website and news media to educate about Lafora Disease and fundraise for research.

What's next:
- 2024 Research Roundtables.
- 2024 Lafora Disease Science Symposium.
- Coordinating discussions and funding a consensus document for biomarkers and treatment of Lafora Disease

Financials

Chelsea's Hope Lafora Children Research Fund
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Operations

The people, governance practices, and partners that make the organization tick.

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Chelsea's Hope Lafora Children Research Fund

Board of directors
as of 02/16/2024
SOURCE: Self-reported by organization
Board chair

Frank Harris

Shiela Barter

Jenifer Merriam

Nadia Ismail

Meredith Williams

Organizational demographics

SOURCE: Self-reported; last updated 1/30/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.