activities · 2 groups
What they do
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Rare Genetic Disease Research and Advocacy 3 activities
- Connecting patients to research and clinical opportunitiesPartners with ResearchMatch to connect individuals with rare diseases to clinical trials and encourages enrollment in patient registries for chromosomal deletion syndromes, providing support to families during the process.
- Funding and advancing research on gene therapy for chromosomal deletion syndromesDirects funds toward research on gene therapy and gene replacement for chromosomal deletions on chromosome 4, including supporting the development of a CRISPR-based platform technology for treating genetic deletion disorders. Focuses on rare conditions such as Wolf Hirschhorn Syndrome.
- Raising awareness and advocating for rare chromosomal deletion syndromesConducts advocacy efforts to raise public awareness about rare diseases, particularly Wolf Hirschhorn Syndrome, and promotes scientific interest in chromosomal deletion syndromes and gene therapy techniques.
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Inclusive Social & Recreational Events 1 activity
- Facilitating family support and community engagement activitiesOrganizes shared feasts, holiday gift-giving, and community events such as festivals and visits to support families affected by rare genetic diseases. Also facilitated participation in events like the Friehofers 5K and a food-truck festival to benefit children with genetic conditions.
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financials · form 990EZ · fy2023
revenue
Total revenue$7K
Contributions & grants$7K98%
Program service revenue——
Investment income$1792%
Other revenue—
expenses
Total expenses$7K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$146K
Cash—
Investments—
Liabilities—
Net assets$146K
1 years on record · 2023–2023
relationships · 23
Who they work with
- Anthony Wynshaw-Boris, MD, PhD Partner — Scientific advisor serving on the advisory board of Liv4theCure
- Cochrane Collaborative Partner — References the Cochrane Collaborative as a source for systematic reviews to support informed healthcare decisions for rare diseases.
- Cody Dorman Partner — Collaborated with or highlighted the story of Cody Dorman and his family in a public event or feature.
- Danny Did Foundation Partner — Partner organization focused on advancing public awareness of epilepsy and preventing seizure-related deaths
- Daryl Armstrong Scott, MD, PhD Partner — Scientific advisor serving on the advisory board of Liv4theCure
- European Science Communication Company (ESCI) Partner — Cristina Hurtado Tripiana is employed at ESCI, a non-profit organization based in Germany
- Grey Effect Foundation Partner — Partner organization that promotes safe sleep habits and provides Owlet Baby Monitors to new parents
- Herbert Cooper Government — Scientist who first described Wolf Hirschhorn Syndrome in 1961, referenced in historical context
- Karen Ho, PhD Partner — Scientific advisor serving on the advisory board of Liv4theCure
- Kids Wish Network Partner — Partner organization that creates hope and happy memories for children with life-threatening conditions
- Kurt Hirschhorn Government — Scientist after whom Wolf Hirschhorn Syndrome is partially named, referenced in historical context of the syndrome's discovery
- Miracle Flights Partner — Partner organization that provides free flights to children and families seeking specialized medical care
- National Organization for Rare Disorders Partner — Recommends families begin research with the National Organization for Rare Disorders when no disease-specific organization is available.
- National Organization for Rare Disorders (NORD) Partner — Lydia Seiders was appointed as the first Volunteer Maryland State Ambassador for NORD’s Rare Action Network
- Professionals for Patient Advocacy in the Life Sciences (PPALS) Partner — David LaGreca is a member of the founding faculty of PPALS’ Patient Advocacy Certificate Training in partnership with Sanford Research
- ResearchMatch Partner — Partnership to connect individuals with rare diseases to clinical trials through a national volunteer registry.
- Rob Hopkin, MD Partner — Scientific advisor serving on the advisory board of Liv4theCure
- Sanford Research Partner — David LaGreca is part of the founding faculty of the Patient Advocacy Certificate Training in partnership with Sanford Research
- Spokane-Nishinomiya Sister Cities Partner — Garrett Saiki, a board member of Liv4TheCure, serves on the board of Spokane-Nishinomiya Sister Cities, indicating a connection between the organizations.
- Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) Partner — John Carey serves as Chair of the Scientific & Medical Advisory Board of SOFT
- Ulrich Wolf Government — Scientist after whom Wolf Hirschhorn Syndrome is partially named, referenced in historical context of the syndrome's discovery
- Uplifting Athletes Partner — Partner organization that connects people impacted by rare diseases with athletes and sports organizations for memorable experiences
- liv4thecure@gmail.com Partner — Contact point for families affected by chromosomal deletion syndromes seeking support or connection.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Innovation Acceleration Through Scientific Leadershipmethodology: innovation accelerationBy identifying and supporting transformative scientific leaders in gene therapy, the organization catalyzes breakthrough innovation for chromosomal deletions, because high-impact researchers can drive progress that scales across multiple rare genetic disorders.
- Lived-Experience-Driven Research and Advocacymethodology: lived-experience-drivenBy grounding research and advocacy in lived experience—such as being founded by a parent of a child with Wolf Hirschhorn Syndrome—the organization ensures mission alignment and urgency, because personal commitment enhances credibility, community trust, and sustained focus on patient-centered outcomes.
- Targeted Research on Shared Genetic Mechanismsmethodology: platform-technology development for genetic deletionsBy focusing scientific research and funding on shared genetic mechanisms across rare chromosomal deletion syndromes—starting with Wolf Hirschhorn Syndrome—the organization accelerates targeted innovation, because discoveries in one deletion syndrome can yield insights applicable to others with similar molecular pathways.