named programs · 2 · from sources
What they call their work
100 PKD-Free Babies Program
Aims to support the birth of 100 children free of PKD through IVF with PGT-M, with funding and medical partnerships
PKD-Free Babies Initiative
Provides financial grants and access to discounted IVF and preimplantation genetic testing (PGT-M) for qualified families to prevent the transmission of PKD to their children
activities · 3 groups
What they do
-
Rare Genetic Disease Research and Advocacy 1 activity
- Advocacy and public awareness on PKD preventionConducts advocacy efforts to raise public awareness about preventing the transmission of polycystic kidney disease, including authoring articles for public audiences such as First Time Parent Magazine to educate families about genetic testing and reproductive options.
-
-
Familial Support for Rare Genetic Conditions 1 activity
- Direct support and education for PKD-affected familiesOffers community support, information, and resources to families with a history of polycystic kidney disease (PKD) on using IVF and PGT-M to prevent passing the disease to future generations. Support is rooted in the organization’s founding response to personal loss from PKD and includes efforts to increase awareness and affordable access to preventive solutions.
-
-
Diabetes and Kidney Disease Research Funding 1 activity
- Funding IVF and PGT-M for PKD-affected familiesProvides direct financial grants and funding to qualified families affected by polycystic kidney disease (PKD) to access in vitro fertilization (IVF) and preimplantation genetic testing (PGT-M) services, enabling the birth of PKD-free children. This includes the PKD-Free Babies Initiative launched in July 2023, which has supported successful births through assisted reproductive technology.
-
financials · form 990 · fy2024
revenue
Total revenue$445K
Contributions & grants$428K96%
Program service revenue$00%
Investment income$17K4%
Other revenue$0
expenses
Total expenses$391K
Program expenses96%
Admin / overhead2%
Fundraising2%
Salaries & benefits$0
Grants paid out$174K
Largest expense lineProfessional Fees
balance sheet
Total assets$1.18M
Cash$353K
Investments$831K
Liabilities$0
Net assets$1.18M
Liquid reserves36.4 mo
3 years on record · 2022–2024 · YoY revenue -46.4%
leadership · form 990 part vii · fy2024
Who runs it
board members · 3
- Larry Wald — Director
- Marlene Wald — Director
- Richard Kellner — Founder
relationships · 11
Who they work with
- Chris Cavallaro Partner — Family member who donated a kidney to support another family member with PKD.
- Colorado Parent Partner — Featured the Rogina family story in a published article about the organization's impact.
- Columbia University Fertility Center Partner — Collaborates on a webinar initiative to build a PKD-free future through fertility and genetic testing advancements.
- Columbia University Irving Medical Center Partner — Collaborates with the PKD-Free Alliance to provide medical expertise and education on PKD.
- First Time Parent Magazine Partner — Collaborated with PKD-Free to publish an article on reducing the risk of passing on PKD.
- Fox 31’s Great Day Colorado Partner — Broadcast a segment featuring the Rogina family and the organization's mission.
- IVF and other partners Partner — Network of IVF providers offering discounted services to families supported by PKD-Free Alliance.
- Over 20 medical centers, fertility clinics, genetic companies, and advocacy organizations Partner — Collaborates with medical centers, fertility clinics, genetic companies, and advocacy organizations to advance family planning education for PKD-impacted families.
- Patient Worthy Network — Platform where the Alliance "Spokesmom" shared her family's PKD journey in a blog post.
- Rich Cavallaro Partner — Family member who donated a kidney to support another family member with PKD.
- WTHR 13 News Partner — Media partner that featured the Payne family's story and included remarks from PKD-Free Alliance leadership.
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.
- Genetic Intervention Through IVF and PGTmethodology: genetic-intervention-preventionBy using in vitro fertilization (IVF) combined with preimplantation genetic testing (PGT-M), we prevent the hereditary transmission of Polycystic Kidney Disease (PKD), transforming a 50% genetic risk into near 0%, because this approach allows selection of embryos free of the PKD mutation before implantation.
- Holistic Lifestyle Management for PKDmethodology: lifestyle-modificationBy supporting diet and lifestyle modifications, we slow the progression of PKD and improve quality of life, because reducing physiological stress on kidneys through controllable health behaviors can delay clinical deterioration.
- Preventive Genetic Health Education and Early Interventionmethodology: preventive_genetic_healthBy promoting early genetic education and intervention, we reduce the incidence and progression of PKD across generations, because informed reproductive choices and timely medical planning empower at-risk families to act before disease transmission occurs.