This Spinal Muscular Atrophy Patient Established a Nonprofit for Disabled Artists

 John knew from an early age that he not only loved music but had confidence in his musical ability. However, there was another very troubling issue in his life. John found that he was unable to keep up with the other kids his age.

John did not know until he was older that he had been born with spinal muscular atrophy (SMA), a disease that kills nerve cells in the spinal cord and brain.

By that time his symptoms had progressed to a point that he feared the disease would curtail his dreams and ambitions.

Even at this young age, John was aware of the effect SMA was having on his life. He describes his struggle as being able to overcome his fears and follow his dreams. John achieved success as a professional musician.

That might have been enough for many people, but not for John. He thought of the many talented disabled artists who needed support in order to showcase their talents.

John’s new ambition led him to establish the non-profit Empowering Artists with Disabilities (EAD) and promote public awareness.

About EAD

EAD offers career counseling, introduces new techniques, and provides job opportunities in the music industry. The underlying goal is to build self-confidence.

Photo courtesy of John Rinaldo

John is dedicated to helping others through EAD as evidenced by their motto “Disability is not a hindrance, ability and talent are the keys.”

EAD, a 501c3 organization, was founded in September 2021. The organization brings together the community’s professional organizers with years of experience in Nassau County’s Music and Arts.

John explains that EAD is focused on creating an atmosphere where disabled artists can develop their talents. Its performance program includes jamming sessions and opportunities to perform live on stage for a real-world experience.

Each artist has his or her unique challenge. EAD emphasizes the importance of being aware of these challenges as it assists the artists in working towards success.

He also explains that disabled artists face more mental health issues, poverty, and unemployment than other segments of our society. EAD is alerting the public to inequities such as:

  • Having other health issues in addition to their disability
  • Facing discrimination from stereotypes leading to social isolation
  • Promoters are hesitant to arrange auditions for disabled musicians
  • Art galleries rarely feature artwork by disabled artists
  • The media does not provide sufficient information about artists with disabilities
  • Educational opportunities and accessibility for the disabled are inadequate
  • Many buildings do not have wheelchair-accessible elevators or bathrooms

Perhaps one of the most prominent inadequacies lies within Long Island, NY, the home of EAD. As noted above, artists with disabilities are burdened with a higher overhead than most people. Yet Long Island does not advocate for these artists or provide opportunities to earn proper wages in return for performing and displaying their art.

Donate For a Win-Win Situation

Donations will enable artists with disabilities to lift some of their burden and develop their talent with the help of a staff of experienced professionals and dedicated members of the community.

The reciprocal side then is for the new artists to give back to the community by displaying their newly developed talent. EAD is primed for this healthy exchange.

If you would like to help these artists with art supplies, performance spaces, or musical instruments please donate through the website (www.eawd.org)

If you have any questions, please contact EAD President John Rinaldo by email: [email protected]

Or phone: (516) 662-1823

“Each and every donation that you give to us will benefit the organization and our artists. It’ll allow us to do more for our artists and for you, our donators, helping us build the – EAD Center of Excellence. While not mandatory it is very much appreciated if you can donate to us.” – John

Please make all payments through our website: www.eawd.org

SINGLE DONATION

Money taken from donations are put back into helping our artists bolster their careers as well as come up with new projects for our artists.

MONTHLY DONATION

Monthly donations can further aid us in providing support to our artists as well as give back to you, our supporters, for the kindness you give us building the EAD Center of Excellence.

Photo courtesy of John Rinaldo

 

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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