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ALPORT SYNDROME FOUNDATION INC
SCOTTSDALE, AZ · EIN 208237159 · Form 990 · FY2022 · NTEE E86 · Health Care · Small ($100K-$1M) · alportsyndrome.org
revenue
$991K
expenses
$499K
net assets
$2.2M
employees
2
volunteers
249
program ratio
85%
mission · from form 990

TO IMPROVE THE LIVES OF THOSE AFFECTED BY ALPORT SYNDROME THROUGH EDUCATION, EMPOWERMENT, ADVOCACY, AND FUNDING RESEARCH. THE FOUNDATIONS VISION IS TO MAKE ALPORT SYNDROME A TREATABLE DISEASE AND FIND A CURE.

profile · synthesized from sources

The Alport Syndrome Foundation Inc is a nonprofit organization dedicated to supporting individuals affected by Alport syndrome, a rare genetic kidney disease. Founded in 2007, it focuses on education, advocacy, and funding research to improve patient outcomes. The foundation operates primarily in the United States and engages with a community of patients and families to address their needs.

irs program accomplishments · form 990 part iii · fy2021

what they reported doing

Program narrative the organization filed with the IRS. Ordered by program spending.

  1. #2 $195K
    ADVANCED CRITICAL RESEARCH PROVIDED TWO VALUABLE RESEARCH GRANTS 1 PROOF-OF-CONCEPT GENE THERAPY DR. JEFF MINER, WASHINGTON UNIVERSITY IN ST. LOUIS AND HEARING LOSS DR. FELIPE SANTOS, MASSACHUSETTS EYE AND EAR INSTITUTE. 2 ESTABLISHED A SCIENTIFIC ADVISORY RESEARCH NETWORK COMPRISED OF 8 INTERNATIONAL EXPERTS IN ALPORT SYDROME WORKING COLLABORATIVELY TO STRATEGICALLY GUIDE ASF ON ACHIEVING ITS RESEARCH INVESTMENT OBJECTIVES. 3 PARTNERED WITH THE NATIONAL KIDNEY FOUNDATION TO DEVELOP THE NKF PATIENT NETWORK-ALPORT SYNDROME, A NEW REGISTRY FOCUSED ON CAPTURING CRITICAL NATURAL HISTORY DATA ON ALPORT PATIENTS, INCLUDING UNDERSTUDIED ASPECTS OF OUR RARE DISEASE TO LAUNCH EARLY 2022. 4 IMPLEMENTED A YEAR-LONG DIAGNOSIS STORIES PATIENT SURVEY TO BETTER UNDERSTAND THE PREVALENCE OF MISDIAGNOSIS AND TO COLLECT DATA POINTS FOR GAINING AN ACCURATE DIAGNOSIS, WITH 350 RESPONSES AS OF DECEMBER 2021. THE FIRST-ROUND REPORT WAS RELEASED MID-YEAR, ALONG WITH A VIDEO COMPANION PIECE FOCUSED ON THE EXPERIENCES OF FEMALE PATIENTS.
named programs · 3 · from sources

what they call their work

Advocacy Initiatives
Engages patients in advocacy efforts to influence healthcare policies and raise awareness about Alport syndrome.
Alport Patient Registry
Collects data from patients to aid researchers in studying trends and patterns related to Alport syndrome.
Educational Resources
Provides tools and content for patients and families to better understand Alport syndrome.
activities · 5 groups

what they do

  • Alport Syndrome Research & Clinical Trials 8 activities
    • Alport Syndrome Research Funding and Promotion
      The organization invests in and promotes global research projects on Alport syndrome, having invested over $3 million since 2010. They support ongoing human clinical trials, collaborate with researchers, and have established a research program that has led to groundbreaking knowledge and clinical trials.
    • Funding Alport Syndrome Research
      Invests over $3 million in research projects globally since 2010, awarding grants to scientists for studies on Alport Syndrome, including genetics, pathology, and potential treatments like gene therapy and drug repurposing.
    • Funding Alport Syndrome Research
      Invests over $3 million in Alport Syndrome research projects globally, awarding grants to researchers for studies on genetics, pathology, and potential treatments for the disease.
    • Funding Alport Syndrome Research
      Invests over $3 million in research projects globally since 2010, awarding grants to scientists for studies on Alport Syndrome, including genetics, pathology, and potential treatments like gene therapy and drug repurposing.
    • Promoting Clinical Trials and Research Collaboration
      Supports and promotes ongoing human clinical trials for Alport syndrome treatments, collaborates with researchers to test candidate genes, and participates in medical and rare disease conferences to centralize research and foster an international network of researchers.
    • Promoting and Supporting Clinical Trials
      Supports and promotes ongoing human clinical trials for Alport syndrome treatments and partners with industry for clinical trial development.
    • Promoting and Supporting Clinical Trials
      Supports and promotes ongoing human clinical trials for Alport syndrome treatments and partners with industry for clinical trial development, contributing to the advancement of new therapies.
    • Research Support and Advocacy
      Invests in and promotes research initiatives for Alport syndrome, including funding studies and supporting clinical trials to advance treatment options.
  • Disease Awareness & Education Campaigns 8 activities
    • Capacity Building for Healthcare Professionals
      Raises awareness and provides education for medical professionals through webinars, conferences, and centralized research information to improve care for Alport syndrome patients.
    • Patient Education and Resource Provision
      The organization creates and distributes educational materials, including patient guides, fast facts, videos, and tip sheets, to help patients and families understand Alport syndrome, manage care, and navigate medical appointments. They also provide personalized messages with relevant resources to members.
    • Patient Education and Support
      Provides a variety of educational resources, including a patient guide, Fast Facts materials, and a monthly e-newsletter to support understanding and management of Alport syndrome.
    • Professional Education and Awareness
      The organization raises awareness and provides education for medical professionals and researchers by centralizing research information, participating in medical and rare disease conferences, hosting educational webinars, and partnering with industry for clinical trial development.
    • Providing Educational Resources and Information
      Creates and distributes educational materials, including patient guides, Fast Facts, videos, and tip sheets, to inform patients, families, and medical professionals about Alport syndrome, its diagnosis, symptoms, treatment recommendations, and management.
    • Providing Educational Resources and Information
      Creates and distributes educational materials, including patient guides, Fast Facts, videos, and tip sheets, to inform patients, families, and medical professionals about Alport syndrome, its diagnosis, symptoms, treatment recommendations, and management.
    • Providing Educational Resources and Information
      Creates and distributes educational materials, including patient guides, fast facts, videos, and tip sheets, to inform patients, families, and medical professionals about Alport syndrome, its diagnosis, symptoms, treatment options, and management.
    • Raising Awareness and Educating Professionals
      Raises awareness and provides education for medical professionals and researchers by centralizing research information, sending email communications, and participating in medical and rare disease conferences.
  • Patient Storytelling & Peer Support Programs 1 activity
    • Community Engagement Events
      Hosts virtual and in-person events, including educational webinars and support meetings, to connect patients and families with resources and each other.
  • Respite and Personal Care Support 1 activity
    • Facilitating Patient and Family Support
      Offers personalized support through staff messages, moderates a private Facebook Support Group with over 3,400 members, and provides a website with information on connecting with others and participating in research.
  • Uncategorized 11 activities
    • Alport Patient Registry
      Launches and administers the ASF Alport Patient Registry, an online platform that collects self-reported information from Alport syndrome patients to support research and community needs.
    • Alport Patient Registry Management
      The organization launched and administers the ASF Alport Patient Registry, an online platform that collects self-reported information from Alport syndrome patients through surveys, including genetic test results, audiograms, and historical lab data, to support research and understanding of the disease.
    • Community Support and Engagement
      The organization fosters a supportive community through virtual and in-person meetings, including "Direct Connect" events, specialized virtual meetings on topics like men's/women's health and living organ donation, and a moderated Facebook Support Group with over 3,400 members. They also provide monthly e-newsletters with updates and host Q&A sessions with medical experts.
    • Facilitating Patient Support Networks
      Moderates a private Facebook Support Group with over 3,400 members and establishes patient subcommittees to identify care gaps and suggest resources, fostering a community for patients and families affected by Alport syndrome.
    • Facilitating Patient Support Networks
      Moderates a Facebook Support Group with over 3,400 members, provides personalized messages with resources, and establishes patient subcommittees to identify care gaps and suggest resources, fostering a supportive community for Alport syndrome patients and families.
    • Hosting Community Meetings and Webinars
      Organizes virtual and in-person meetings, including "Direct Connect" events and webinars, to update the community on research, provide support, facilitate connections among patients and families, and discuss specific topics related to Alport syndrome care and living with the condition.
    • Hosting Community Meetings and Webinars
      Organizes virtual and in-person meetings, including "Direct Connect" events and webinars, to update the community on research, provide support, facilitate connections among patients and families, and discuss specific topics related to Alport syndrome such as men's and women's health, living organ donation, and medications.
    • Hosting Virtual and In-Person Community Meetings
      Organizes and hosts "Direct Connect" virtual meetings via Zoom and in-person events for Alport patients and family members to connect, share experiences, ask questions, and receive updates on research and care, covering topics such as new diagnoses, men's and women's health, living organ donation, and medications.
    • Maintaining an Alport Patient Registry
      Operates and sustains the ASF Alport Patient Registry, an online platform that collects self-reported information, including genetic test results and audiograms, from Alport syndrome patients in the U.S. to support research and understanding of the disease.
    • Operating an Alport Syndrome Patient Registry
      Launches and administers the ASF Alport Patient Registry, an online platform that collects self-reported information from patients through surveys, including genetic test results, audiograms, and historical lab data, to support research and understanding of the disease.
    • Operating an Alport Syndrome Patient Registry
      Launches and administers the ASF Alport Patient Registry, an online platform that collects self-reported information from patients through surveys, including genetic test results, audiograms, and historical lab data, to support research and understanding of the disease.
financials · form 990 · fy2022
revenue
Total revenue$991K
Contributions & grants$991K100%
Program service revenue$00%
Investment income$1700%
Other revenue$0
expenses
Total expenses$499K
Program expenses85%
Admin / overhead11%
Fundraising5%
Salaries & benefits$145K
Grants paid out$100K
Largest expense lineCompensation
balance sheet
Total assets$2.28M
Cash$2.13M
Investments$13K
Liabilities$42K
Net assets$2.24M
Liquid reserves51.5 mo
3 years on record · 2020–2022 · YoY revenue -0.3%
leadership · form 990 part vii · fy2022

who runs it

board members · 8
  • ANDRE WEINSTOCK — RESEARCH CHAIR DIRECTOR
  • ANDREW KRONENBERG — CHAIR
  • JANINE REED — DIRECTOR
  • MARTIN DUNLEAVY — TREASURER
  • PHILLIP KUMNICK — DIRECTOR
  • RYAN LINDER — SECRETARY
  • SHARON LAGAS — CO-FOUNDER DIRECTOR
  • STEPHEN MALACH — DIRECTOR
relationships · 33

who they work with

  • Caitlin, Carter, MD Partner — Member of the ASF Medical Advisory Committee who addresses patient inquiries regarding pediatric Alport treatment medications.
  • Dr. A. Cecil Alport Government — Names the syndrome after British physician Dr. A. Cecil Alport, who first described the condition in 1927.
  • Dr. Bradley Warady Partner — Member of the ASF Medical Advisory Committee and collaborated on creating pediatric care educational resources and Q&A sessions.
  • Dr. Bradley Warady Partner — Member of the ASF Medical Advisory Committee who explains the importance of the patient registry.
  • Emerging Leadership Council Partner — Contributes to the development of the Patient Guide.
  • Facebook Partner — Uses Facebook to host a moderated support group for the Alport syndrome community.
  • GOFARR Laboratory for Organ Regenerative Research and Cell Therapeutics in Urology at Children’s Hospital Los Angeles Partner — Received two grants from NIH for Alport syndrome research, with Dr. Laura Perin (ASF Scientific Advisory Research Network and funding recipient) as Co-Principal Investigator.
  • Jackson Laboratory Partner — Awarded a grant to Dr. Ron Korstanje, who leads a research team at The Jackson Laboratory.
  • Kidney Foundation of Canada Funder — Co-funded research projects.
  • Kumamoto University Partner — Awarded a grant to Dr. Hirofumi Kai from Kumamoto University.
  • Medical Advisory Committee Partner — Provides guidance for tip sheets.
  • Medical Advisory Committee Partner — Provides input for the development of the Patient Guide.
  • Monash University Partner — Awarded a grant to Dr. Sharon Ricardo from Monash University.
  • NEPTUNE research consortium Partner — Sponsors a multi-year natural history study of U.S. Alport syndrome patients within this consortium.
  • National Institute of Diabetes and Digestive and Kidney Disease Funder — Awarded a $1.49M grant to Dr. Ron Korstanje's team at The Jackson Laboratory to study Alport syndrome genetics.
  • National Institutes of Health (NIH) Funder — Awarded two grants to the GOFARR Laboratory at Children's Hospital Los Angeles for Alport syndrome research.
  • Royal Children’s Hospital Partner — Funded research by Dr. Melissa Little from Royal Children’s Hospital.
  • Saban Research Institute at Children‘s Hospital Los Angeles Partner — Awarded a grant to Dr. Stefano Da Sacco from the Saban Research Institute at Children‘s Hospital Los Angeles.
  • Scientific Advisory Research Network Partner — Collaborates to create surveys and gather insights on genetic variants.
  • Scientific Advisory Research Network Partner — Helps shape a well-connected landscape of researchers internationally.
  • Texas A&M University Partner — Funded research led by Dr. Mary Nabity from Texas A&M University.
  • The Jackson Laboratory Partner — Dr. Ron Korstanje, a member of ASF’s Scientific Advisory Research Network, leads a research team here that received a grant to study Alport syndrome genetics.
  • The University of Manchester Partner — Funded research by Dr. Rachel Lennon from The University of Manchester.
  • University Medical Centre Göttingen Partner — Awarded a grant to Dr. Oliver Gross from the University Medical Centre Göttingen.
  • University of Cyprus Partner — Awarded a grant to Dr. Constantinos Deltas from the University of Cyprus.
  • University of Melbourne Partner — Awarded a grant to Dr. Judy Savige from the University of Melbourne.
  • University of Miami Partner — Awarded a grant to Dr. Alessia Fornoni from the University of Miami.
  • University of Minnesota Partner — Funded research by Drs. Peter Santi and Cliff Kashtan from the University of Minnesota.
  • University of Siena Partner — Funded research led by Dr. Alessandra Renieri from the University of Siena.
  • University of Toronto Partner — Awarded a grant to Dr. James Scholey from the University of Toronto.
+ 3 more