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.”

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, w

as under the same umbrella.

Header photo © Lovecake Photography

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.