Potential Aid for Patient and Community-Based Organizations Impacted by Coronavirus


Dear Speaker Pelosi and Leaders McConnell, McCarthy, and Schumer:

The 217 undersigned organizations write regarding prospective federal intervention to support the airline, travel, and other targeted industries impacted by the coronavirus (COVID-19) epidemic. We urge you to also include nonprofit patient advocacy community-based organizations within any federal aid packages or supplemental appropriations measures, as many have been and will be significantly harmed by reduced charitable giving, travel restrictions, fund-raising event cancellations, and reduced meeting attendance as a result of COVID-19. Because of their tax-exempt status, this may necessitate targeted assistance or reshaping tax code-related assistance.

As non-partisan, nonprofit organizations our mission is to serve the patients and communities we represent at no-cost. We are the groups helping the people most impacted by the virus, those with underlying chronic conditions that often result in more severe cases of illness. We expect demand for their invaluable services will only increase during this public health emergency, while at the same time seeing significant reductions in revenue. In addition, the nonprofit sector is the third largest workforce in the U.S., behind retail and manufacturing. In order to continue their valuable work, it is critical that patient advocacy and community-based organizations and other nonprofits be included in any legislation aimed at stemming the growing economic burden of the COVID-19 pandemic.

The spring season is the time of year when many patient advocacy and community-based organizations hold important charitable events that drive a significant portion of their revenue. This includes runs/walks, bike rides, and galas. As you are no doubt aware, the fast-spreading COVID-19 epidemic has prompted the cancellation of thousands of these types of events, as well as other mission-critical scientific and membership conferences.

The loss of these meetings and conferences is especially difficult as they play a significant role in advancing science and educating patients and providers. These meetings are largely dependent on in-person attendance at convention centers, hotels, and other event facilities. Thus, the impact of cancellations is, in fact, exponential. The groups not only lose important revenue that helps them support people with chronic conditions, they also forfeit substantial, non-refundable expenses obligated to hotels, event spaces, and vendors. We believe it would be unfair to propose financial relief for businesses such as hotels or other venues, that will collect large sums in cancellations fees, without considering the plight of the nonprofits paying those cancellation fees.

Many associations operate similarly to small businesses and are greatly impacted if employees are forced to take sick leave or are quarantined as a result of COVID-19 exposure. We are aware the Administration and Congress are considering measures for small businesses that may require cash flow assistance amid the outbreak, and urge that tax-exempt entities be included in any temporary aid designed to stem the economic fallout resulting from COVID-19.

Additionally, we also are concerned by potential impacts on individual and corporate giving in a time when health-related organizations are most needed. Congress should ensure communities are able to support their local nonprofits during this crisis by enacting a targeted, temporary giving incentive that enables all residents, regardless of whether they claim itemized deductions, to receive a tax incentive for giving to the work of charitable nonprofits responding to, or suffering from, the coronavirus.

Specifically, we ask that you assure that any additional economic relief or stimulus legislation:

• Incentivize all Americans to support the vital work of America’s charities, by enacting an “above-the-line” or universal charitable deduction for contributions through the end of 2021. Further, to help those who step forward to help America’s charitable organizations to immediately assist the most vulnerable, Congress should permit taxpayers to donate today – at the height of the pandemic – and claim the benefit from these deductions on 2019 tax returns.

• Make tax credits and deductions applicable not just to income taxes, but to the taxes nonprofits pay, such as payroll taxes. Further, Congress should also ensure that relief and stimulus legislation designed to assist for-profit businesses in the areas of unemployment insurance, employee retention, and risk insurance must also address the unique challenges and realities that nonprofits face.

• Include $60 billion in emergency stimulus funding aimed at helping adversely affected national and local organizations. These funds can be distributed quickly through multiple funding streams, including, but not limited to, expansion of the Economic Injury Disaster Loan program for nonprofit employers, emergency grants to nonprofits operating under grants from federal, state, local, or other pass-through entities, and other mechanisms to ensure the continued flow of charitable donations.

The nation’s leading patient advocacy and community-based organizations stand ready and able to assist Congress and the administration in combating the COVID-19 outbreak in addition to meeting our mission to serve people with complex health conditions. But, they will need to be sure they can be financially stable through present and future uncertainties.

Thank you for your consideration.


A Cure In Sight

Able2 Enhancing potential, inc

Adrenal Insufficiency United

Aidan Jack Seeger Foundation

Alagille Syndrome Alliance


All Things Kabuki

Allergy & Asthma Network

Alliance for Aging Research

ALS Association

Alzheimer’s Association

Alzheimer’s Impact Movement

American Academy of Physical Medicine and Rehabilitation (AAPM&R)

American Association for Psychoanalysis in Clinical Social Work

American Association of Suicidology

American Association on Health and Disability

American Association on Intellectual and Developmental Disabilities

American Autoimmune Related Diseases Association

American Council of the Blind

American Counseling Association

American Diabetes Association

American Heart Association

American Kidney Fund

American Lung Association

American Mental Health Counselors Association (AMHCA)

American Parkinson Disease Association

American Society for Reproductive Medicine

American Speech-Language-Hearing Association

American Thoracic Society

Amputee Coalition

Angioma Alliance

Anxiety and Depression Association of America

Arthritis Foundation

Asthma and Allergy Foundation of America

Batten Disease Support & Research Association

Beyond Celiac

Brain Injury Association of America

Brian Grant Foundation

Bridge the Gap – Syngap Education and Research Foundation

Cancer Support Community

Caregiver Action Network

Celiac Disease Foundation

Center for Independence of the Disabled, NY

Center of Family Love

CFC International

Charcot-Marie-Tooth Association

Child Health & Resilience Mastery (CHARM)

Children’s Cardiomyopathy Foundation

Children’s Craniofacial Association

Christopher & Dana Reeve Foundation

Chronic Migraine Awareness inc

CLOVES Syndrome Community

CMA, Inc.

Coalition For Headache And Migraine Patients (CHAMP)

Colorectal Cancer Alliance

Community Health Charities

Congenital Hyperinsulinism International

COPD Foundation

Crohn’s & Colitis Foundation

Cure SMA


Danielle Byron Henry Migraine Foundation

Davis Phinney Foundation for Parkinson’s

Depression and Bipolar Support Alliance

Diabetes Patient Advocacy Coalition

DIRECT Center for Independence

Dreamsickle Kids Foundation

Ear Community, Inc.

Epilepsy Foundation

Every Mother Counts

Family Voices Indiana

Fibrous Dysplasia Organization

Fight Colorectal Cancer

FORCE: Facing Our Risk of Cancer Empowered

Friedreich’s Ataxia Research Alliance

GBS|CIDP Foundation International

Genetic Alliance

Global Alliance for Behavioral Health and Social Justice

Global Lives Institute

Glut1 Deficiency Foundation

GO2 Foundation for Lung Cancer

Gould Syndrome Foundation

Greater Tampa Bay Oral Health Coalition

GRIN2B Foundation

Hawai’i Parkinson Association


Hemophilia Federation of America

Hermansky-Pudlak Syndrome Network Inc.

Histiocytosis Association

Huntington’s Disease Society of America

Hydrocephalus Association

Independence Care System, Inc.

International Fibrodysplasia Ossificans Progressiva (FOP) Association

International Myeloma Foundation

International OCD Foundation

International Pemphigus Pemphigoid Foundation


Jett Foundation


Klippel-Trenaunay Support Group


Lakeshore Foundation

Leukemia & Lymphoma Society

Little Hercules Foundation

Little Miss Hannah Foundation

LUNGevity Foundation

Lupus Foundation of America

Lymphangiomatosis & Gorham’s Disease Alliance

Lymphatic Education & Research Network

Lymphoma Research Foundation

M-CM Network

March for Moms

Melanoma Research Foundation

Mended Hearts

Mental Health America

Mesothelioma Applied Research Foundation

Michigan Parkinson Foundation

Minority Corporate Counsel Association


MLD Foundation

Moebius Syndrome Foundation

Multiple Sclerosis Association of America

Muscular Dystrophy Association

Narcolepsy Network

National Alliance for Caregiving

National Alliance for Hispanic Health

National Alliance on Mental Illness

National Alopecia Areata Foundation

National Council on Aging

National Council on Independent Living

National Diabetes Volunteer Leadership Council

National Eating Disorders Association

National Eczema Association

National Forum for Heart Disease & Stroke Prevention

National Foundation for Ectodermal Dysplasias

National Headache Foundation

National Health Council

National Hemophilia Foundation

National Kidney Foundation

National Legal Aid & Defender Association

National Minority Quality Forum

National Multiple Sclerosis Society

National Osteoporosis Foundation

National Patient Advocate Foundation

National PKU News



Northwest Parkinson’s Foundation

Obesity Action Coalition

Organic Acidemia Association

Osteogenesis Imperfecta Foundation

Ovarian Cancer Research Alliance

Pancreatic Cancer Action Network

Parent Project Muscular Dystrophy

Parkinson & Movement Disorder Alliance

Parkinson Alliance/Parkinson’s Unity Walk

Parkinson Association of Alabama

Parkinson Association of the Rockies

Parkinson’s Resources of Oregon

Parkinson’s Foundation

Personalized Medicine Coalition

Physician-Parent Caregivers

Physician-Patient Alliance for Health & Safety

Polycystic Kidney Disease Foundation

Postpartum Support International

Prevent Blindness

Prostate Health Education Network, Inc.

Pten Foundation

PTEN Hamartoma Tumor Syndrome Foundation

Pulmonary Alveolar Proteinosis Foundation

Pulmonary Fibrosis Foundation

PXE International

Rare Army

Rare Kids Network



RESOLVE: The National Infertility Association

RUNX1 Research Program

Sarcoidosis of Long Island

Say Yes to Hope

Schizophrenia and Related Disorders Alliance of America

Siegel Rare Neuroimmune Association

Sjogren’s Foundation

Social Cohesion Resources

Soft Bones, Inc., The US Hypophosphatasia Foundation

Special Olympics International

Spina Bifida Association

St. Baldrick’s Foundation

Superficial Siderosis Research Alliance Inc.

Supporting Our Sisters International Inc.

Susan G. Komen

Team Joseph

The Asthma and Allergy Foundation of America

The College Diabetes Network

The Familial Hypercholesterolemia Foundation

The FamilieSCN2A Foundation

The FH Foundation

The Global Foundation for Peroxisomal Disorders

The Headache and Migraine Policy Forum

The Jansen’s Foundation

The LAM Foundation

The Mastocytosis Society, Inc.

The Michael J. Fox Foundation for Parkinson’s Research

The Myositis Association

The Snyder-Robinson Foundation

The Sturge-Weber Foundation

The TMJ Association

The Trevor Project

The XLH Network, Inc.

Tourette Association of America

TransCen, Inc.

Tuberous Sclerosis Alliance

United Leukodystrophy Foundation

VHL Alliance

WomenHeart: The National Coalition for Women with Heart Disease

World Health Education Foundation

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