Community Based Organizations

A voluntary health agency that works to combat muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related muscle-debilitating diseases. The organization is committed to finding treatments and cures while providing a comprehensive program to empower families with support to help them thrive and stay independent including summer camps for kids, peer support, equipment resources and more. Related volunteer opportunities available.COVID-19 Update: following all CDC and state guidelines.

• Voluntary Health Organizations
• Assistive Technology Expense Assistance
• Health/Disabilities Related Volunteer Opportunities
• Therapeutic Camps
• Health/Disability Related Support Groups

Advocates for children who have genetic, rare or undiagnosed disorders with a photography and blog project. AOA brings awareness to and shares stories and images of children with genetic disorders and those needing a diagnosis.

Provides information about Fabry disease, research and clinical trials information, funding programs, and more. See Recommended Schedule of Assessment at https://www.fabrydisease.org/images/ReferencePDFs/fabry-registry-schedule-of-assessments.pdf. Programs, include:

• Annual conference
• Family camp
• Personal support
• Research and educational information

Advocates for adults with autism and their families. Helps those with autism make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.

A national advocacy and public policy center for individuals with down syndrome. Has more than 300 local organizations that serve the Down Syndrome community.

Services Include:

• New parent support and education
• Family meetings, sibling and grandparent support
• Recreational activities
• Lending libraries
• Helplines
• Regional conferences
• Partnerships with Down syndrome clinics
• Training for medical professionals and educators
• Advocacy
• Buddy Walks

Advocates for all persons who are deaf-blind of any chronological age and cognitive ability.

Services Include:

• Advocates
• Fosters family-to-family relationships
• Promote partnerships
• Provides information and resources
• Offers training opportunities
• Promotes Deaf-Blind awareness
• Builds family leaders

UCP and its 64 affiliates have a mission to advance the independence, productivity and full citizenship of people with a broad range of disabilities by providing services and support to more than 176,000 children and adults every day. UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams.

Improving lung health and preventing lung disease through Education, Advocacy and Research. With the generous support of the public, we are "Fighting for Air." Provides asthma research.

Provides community support, information, and advocacy to advocacy to families, survivors, and friends who have been affected by childhood and adolescent cancer.

Provide support, resources, education, and advocacy for those who are impacted by low vision and visual impairment.

Funds research to understand hearing and balance functions, and educates people on how to prevent, identify, preserve, and restore these.

Empowers families and health care professionals with knowledge in organic acidemia metabolic disorders. Supports early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

The mission of United Way is to improve people's lives by mobilizing the caring power of communities.

United Ways across the country activate community resources to make the greatest possible human impact. The United Way system includes approximately 1,400 community-based United Way organizations. Each is independent, separately incorporated and governed by local volunteers.

As community leaders, United Ways address the most critical local issues and mobilize resources beyond the dollars that are pledged through their fund-raising efforts. Community partners often include schools, government policy makers, businesses, organized labor, financial institutions, voluntary and neighborhood associations, community development corporations and the faith community.

United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals. Offers options to request assistance, connect with a mentor, connect with a chapter, advocacy, and product and service information.

Spinal Cord Resource Center: Submit questions on any aspect of Spinal Cord Injury/Disease or get information and resources that may help you resolve a situation including local support.

Disability Products & Services Guide: Search the United Spinal Association Disability Products & Services Directory to discover providers and organizations that specialize in optimizing the health, independence and quality of life of people with a spinal cord injury or disease.

• Health/Disability Related Support Groups
• Information and Referral
• Legislative Advocacy
• Self Advocacy Support