named programs · 3 · from sources
What they call their work
IgG4ward Foundation Collaboration
Partnership with the IgG4ward Foundation to provide resources and support for those affected by Type 1 AIP.
Severe High Triglycerides & Familial Chylomicronemia Syndrome
Program focused on educating about severe hypertriglyceridemia and familial chylomicronemia syndrome, including causes, risks, and available treatments.
Understanding Autoimmune Pancreatitis
Educational resource providing detailed information about autoimmune pancreatitis, including types, symptoms, diagnosis, and treatment options.
activities · 4 groups
What they do
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Pancreatic Cancer Research and Support 2 activities
- Advancing drug discovery and development for chronic pancreatitisBuilds a collaborative community of patients, families, scientists, clinicians, and advocates to accelerate the development of therapies for chronic pancreatitis, including through partnerships with biotech companies and patient engagement in research planning.
- Conducting and supporting pancreatitis-related researchConducts patient journey interviews, develops care frameworks, identifies drug repurposing candidates, and supports clinical trials to advance understanding and treatment of pancreatitis. Includes development of a Best-Practices Care Protocol and identification of 60 potential drug candidates.
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Healthcare Policy Advocacy 1 activity
- Advocating for patient-centered drug development and policyOrganizes patient panels and participates in FDA and NIH meetings to ensure patient perspectives inform research and regulatory decisions, including contributions to the Voice of the Patient Report and advocacy for accelerated therapy development.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing patient education and support resourcesProduces and distributes educational materials including blogs, videos, webinars, and dietary guidance on managing chronic pancreatitis, pain, nutrition, mental health, and treatment options such as TPIAT and enzyme replacement therapy. Maintains online communities and facilitates access to peer support platforms.
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Rare Genetic Disease Research and Advocacy 1 activity
- Supporting FDA approval of treatments for rare metabolic conditionsProvided support leading to the FDA approval of two medications—TRYNGOLZA and REDEMPLO—for adults with familial chylomicronemia syndrome (FCS), a rare metabolic disorder.
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financials · form 990 · fy2024
revenue
Total revenue$1.26M
Contributions & grants$1.25M99%
Program service revenue$00%
Investment income$56K4%
Other revenue$-47K
expenses
Total expenses$663K
Program expenses69%
Admin / overhead14%
Fundraising18%
Salaries & benefits$428K
Grants paid out$50K
Largest expense lineCompensation
balance sheet
Total assets$1.92M
Cash$1.92M
Investments$0
Liabilities$18K
Net assets$1.91M
Liquid reserves34.8 mo
5 years on record · 2020–2024 · YoY revenue +47.5%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| MEGAN GOLDEN | PRESIDENT AND CEO | 40 | $83K |
board members · 6
- DEBBIE NIEDERHOFFER — BOARD MEMBER
- ERIC GOLDEN — BOARD MEMBER
- JAMES MEDSKER — TREASURER
- LINDA MARTIN — BOARD CHAIRPERSON
- MICHAEL LEVITAN — BOARD MEMBER
- SAM SHRAUGER — BOARD MEMBER
relationships · 27
Who they work with
- Accessia Health Partner — Lists Accessia Health as a provider of financial assistance for prescriptions, medical treatments, and related expenses for those with chronic medical conditions.
- Air Charity Network Partner — Lists Air Charity Network as a provider of free air transportation to medical facilities for individuals who are financially distressed or unable to use public transportation.
- Arrowhead Pharmaceuticals Partner — Collaborates on advancing treatments for FCS, including the development and approval of REDEMPLO (plozasiran).
- FDA Government — Held a patient-focused drug development meeting with the FDA and contributed to the Voice of the Patient Report.
- Foundation for Childhood Pancreatitis Partner — References the Childhood Pancreatitis – Support Facebook group as being offered by the Foundation for Childhood Pancreatitis.
- Give an Hour Partner — Collaborates with Give an Hour on a video series about pancreatitis and mental health.
- Give an Hour Partner — Collaborates with Give an Hour to produce a video series on the mental health impacts of pancreatitis.
- Grady Health System Partner — Collaborates with Grady Health System on clinical care initiatives for pancreatitis patients.
- Harvard Medical School Partner — Collaborates with Harvard Medical School through expert participation in patient education webinars.
- Harvard Medical School Partner — Features expertise from Dr. Yasmin Hernandez-Barco affiliated with Harvard Medical School in educational content on autoimmune pancreatitis.
- HealthWell Foundation Partner — Lists the HealthWell Foundation as a provider of financial assistance for copays, premiums, deductibles, and out-of-pocket expenses for underinsured patients.
- Impact Investors Partner — Engages impact investors to fund research and drug development initiatives.
- Industry Partner — Partners with industry to advance drug discovery and development for chronic pancreatitis.
- Ionis Pharmaceuticals Partner — Collaborates on advancing treatments for FCS, including the development and approval of TRYNGOLZA (olezarsen).
- Johns Hopkins Pancreatitis Pain Program Partner — References the Johns Hopkins Pancreatitis Pain Program as a research and patient care program offering new pain treatments for chronic pancreatitis.
- Massachusetts General Hospital Partner — Collaborates with Dr. Yasmin Hernandez-Barco from Massachusetts General Hospital to explain types of autoimmune pancreatitis and treatment options.
- Massachusetts General Hospital Partner — Partners with Massachusetts General Hospital to host patient education webinars featuring medical experts.
- Mercy Medical Angels Partner — Lists Mercy Medical Angels as a provider of free transportation to medical care for patients with life-threatening conditions.
- National Institutes of Health Partner — Organized and led a patient panel at an NIH meeting to accelerate therapy development for pancreatitis.
- National Pancreas Foundation Partner — Collaborated with the National Pancreas Foundation to establish Camp Hope, a summer camp for children with pediatric pancreatitis or who have undergone TPIAT surgery.
- Patient Advocate Foundation Partner — Lists PAF Co-Pay Relief, administered by the Patient Advocate Foundation, as a financial assistance program for patients with chronic pancreatitis.
- Patients Partner — Involves patients as key collaborators in research and drug development efforts.
- Payers Partner — Collaborates with payers to support treatment access and sustainability.
- Providers Partner — Works with healthcare providers to improve patient care and integrate new treatments.
- Rebecca’s Wish Partner — Collaborated with Rebecca’s Wish to establish Camp Hope, a summer camp for children with pediatric pancreatitis or who have undergone TPIAT surgery.
- Researchers Partner — Collaborates with researchers to drive new research and accelerate drug discovery for chronic pancreatitis.
- world’s top pancreatic experts Partner — Collaborates with leading pancreatic experts to guide research and development strategy.
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.
- Accelerated Research Through Focused, Coordinated Investmentmethodology: focused-research-accelerationBy directing well-funded, coordinated research efforts toward high-impact disease areas like chronic pancreatitis, we accelerate the development of effective treatments and cures because focused scientific prioritization increases the likelihood and speed of breakthrough outcomes.
- Multistakeholder Collaboration to Accelerate Curesmethodology: multi-stakeholder-collaborationBy integrating researchers, clinicians, patients, payers, industry, and impact investors into a shared innovation ecosystem, we accelerate cure development because diverse expertise and aligned incentives reduce duplication and increase translational efficiency.
- Value-Based and Impact-Driven Financing for Health Outcomesmethodology: value-based financingBy aligning funding with measurable patient outcomes and partnering with impact investors, we incentivize effective treatments and sustainable innovation because financial models that reward success accelerate the development and adoption of high-value therapies.