Muscular Dystrophy Awareness (MDA) Red Ticket Raffle
In 1952, NALC became MDA’s first national sponsor and declared it the NALC’s official charity. Since that time, the NALC and this Branch have remained faithful to their commitment in helping save and improve the lives of people fighting muscle diseases, raising countless millions of dollars which have, and continue to, advance MDA’s mission. Since that time, we have kept our pledge to be with MDA until cures are found for the 43 diseases under the MDA umbrella.
Branch 6000 has been actively involved in the fight to end this dreaded disease. That is why we are declaring “OCTOBER” as “MUSCULAR DYSTROPHY AWARENESS MONTH.” Over the past 30 years, thanks to the members and this branch, we have raised over 962,000.00.
MUSCULAR DYSTROPHY ASSOCIATION (MDA) like many organizations are still feeling the effects of the Covid-19 pandemic and inflation, the MDA needs our help more now than ever as we begin our fundraising campaign for 2024-2025. Our first event will be the Red Ticket Raffle, for those who do not know how it works your steward or his/ her designee will go around the office and ask you to purchase a raffle. We are asking every member for a $2.00 donation to MDA to purchase a raffle. All you must do is write your name and station on the back of the ticket and hand it back to the steward. The steward will give the tickets to the Full-Time Officer and at the December branch meeting the winner’s name will be announced (you do not have to be present to win). The top prize for the lucky winner will receive $500.00 and there will be an additional consolation prize as well.
The money we raise will help the MDA create more hope and answers for families living with muscular dystrophy and related diseases. The research the MDA performs helps to study neuromuscular diseases to uncover breakthroughs that accelerate treatments and cures. MDA’s research approach is that it can often apply information learned from one disease to achieve progress with other diseases. Early diagnosis, highly specialized care, and access to promising clinical trials help ensure the best possible outcomes for individuals and families facing muscular dystrophy, ALS, and related life-threatening diseases. Here are some of the areas the MDA uses the funds we raise for:
• Research: MDA is the largest source of funding for neuromuscular disease research outside of the federal government and has provided more than $1 billion in funding since its inception.
• Treatments: Research that MDA has supported is directly linked to approved, life-changing therapies across multiple neuromuscular diseases.
• Technology: MDA’s MOVR platform is the first and only data hub that uniquely aggregates health care, genetic and patient-reported data, transforming health outcomes and drug development in neuromuscular disease.
The money we have raised has played a part enabling MDA to lead the way in caring for people living with Muscular Dystrophy, ALS, and related neuromuscular diseases through the largest nationwide network of multidisciplinary MDA Care Center. The Care Center Network has grown to more than 150 top medical institutions across the country, including 46 designated MDA/ALS Care Center. In the New York area there are 17 MDA Care Centers and 4 MDA / ALS Care Centers. There are over 17,600 individuals living with neuromuscular disease in New York and over 5200 people visited one of these centers in 2022.
The funds we raise also go towards the MDA camp. I have worked at one of those camps and it is something to see. Children with muscular diseases are to be able to go to the camp for a week every year to learn vital life skills and independence and get to experience other recreational programs at no cost to their families. The camps have medical personnel on-site to ensure all types of medical issues a child may experience are able to be treated while there. The MDA camp is vital for these children because they can forget their problems and just be a kid. During the pandemic, the camps were not able to provide in-person sessions but were able to provide a virtual camp experience. Fortunately, the camps have reopened and they were able to enjoy the camp experience again.
However, the money does not only go towards the above, but it also goes towards helping families who cannot afford to pay for motorized wheelchairs. The specialty equipped wheelchairs can cost up to $20,000. People with muscular-related diseases unable to afford these specialty wheelchairs would be housebound without access to a motorized wheelchair. One time while I was representing the branch and the membership at the Jerry Lewis Telethon’s I witnessed Tony Orlando talking to the children off camera while I was waiting to go on to present our check. I heard one child state the happiest day of his life was getting a motorized wheelchair so he could go outside and play with his friends. Once I heard that I knew I would always work towards helping these children and not take for granted the simple task of walking or standing.
Raising money for the MDA is an important part of what this Union does. It shows America what kind of people Letter Carriers are. But most importantly it’s people helping people who are less fortunate. Please help, and thanks for caring!
