Resources

A progressive muscular dystrophy diagnosis isn’t the end—it’s the beginning.

Resources for affected people, supporters, medical personnel, and more

Get involved

AccesSurf “continues to be a pioneer in the advancement of adaptive water sports, ocean recreation, and therapeutic instruction for people with disabilities throughout the state of Hawaii and worldwide.” The first short movie featuring only adaptive surfers was put together by Freedomedia for AccesSurf in 2016, and I was amazingly fortunate to be featured in the movie. That’s me (at 00:57) being lifted in a princess carry on the way out to the water for the expression session.

Challenged Athletes Foundation’s mission is “empowering lives through sport.”

Life Rolls On believes that “adaptive surfing and skating could inspire infinite possibilities beyond any disability.”

Ms. Wheelchair America’s mission is to “provide an opportunity of achievement for women who happen to be wheelchair users to successfully educate and advocate for the more than 64 million Americans living with disabilities.”

Surfgimp Foundation’s mission is to “support, through financial grants, individuals with disabilities who require assistance to participate in desired physical activities.”

Supportive groups

Assistance Dogs International “is a worldwide coalition of not-for-profit programs that train and place Assistance Dogs.”

International Association of Assistance Dog Partners’ “mission is to preserve and expand public access rights for persons with disabilities partnered with assistance dogs (guide, hearing, and/or service dogs).”

K9s 4 Mobility is “dedicated to enriching the lives of others through the training, placement, and support of Assistance Dog Partnerships.” Michelle, Sophie’s trainer, is the driving force and lead trainer.

Muscular Dystrophy Association’s mission is to “relentlessly pursue our promise to transform the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases through research, care, and advocacy.”

National Mobility Equipment Dealers Association is “dedicated to expanding opportunities for people with disabilities to safely drive or be transported in vehicles modified with mobility equipment to fit their specific needs.”

State Vocational Rehabilitation Agencies provide “a variety of services to persons with disabilities, with the ultimate goal to prepare for, enter into, or retain employment.” It is funded by a combination of state and federal funds, and eligibility for the program is determined by the local office.

Art and Fashion

Erica Tamburo Art is fine art multiple-exposure photography that heals the heart and uses alcohol inks and botanicals.

IZ Adaptive is run by Izzy Camilleri, who, since 2009, has “focused on inclusive fashion . . . with the mission to make great-looking and well-fitting clothes accessible to everyone.” Her clothes help me feel good in my skin while sitting on my wheelchair.

Just for the Love is my photography website, where I want to show you the unseen and share my unique perspective as I roam on my wheelchair with my camera balanced on my leg.

MAKING WAVES FOR GOOD

Making Waves for Good is my company focused on taking the unseen and making it visible through public speaking about the You Decide Movement, ADA usability, fine art photography, and publishing.

Hospitals and University Programs

Frazier Rehabilitation Institute is part of the University of Louisville hospital system and “has built its reputation as the regional leader in comprehensive acute rehab.”

MossRehab is the “largest provider of physical medicine and rehabilitation in the Philadelphia region.”

The Association of Former Students at Texas A&M University “seeks to perpetuate and strengthen those bonds that connect Aggies with each other and the university.” Texas Aggies are known for “our character, our determination, and our uncommon loyalty to our alma mater and to our fellow former students.”

University of Pittsburgh’s Human Engineering Research Laboratories, under the direction of Dr. Rory Cooper, aims “to continuously improve the mobility and function of people with disabilities through advanced engineering in clinical research and medical rehabilitation.” The Robotics for Assessment and Rehabilitation (RoAR) Lab, where I worked with Dr. Bambi Brewer, was under the same umbrella.