MDA Recognizes the Esteemed Members of Our Volunteer Advisory Committee
By Rebecca Hume | Wednesday, April 20, 2022
For over 70 years, the Muscular Dystrophy Association has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, volunteers are tightly woven into MDA’s fabric. We could not build on our legacy of innovation in research, care, and fundraising without the help of countless volunteers.
On Volunteer Recognition Day, we are excited to honor the MDA Volunteer Advisory Committee. This esteemed group of volunteer leadership helps to inform and oversee MDA’s volunteerism strategy. Developed during the Covid-19 pandemic, a key function of the committee has been to reposition the volunteer structure to adapt to the evolving changes inside and outside of our organization. The committee continues to work diligently to grow and expand MDA’s volunteer footprint and mission impact.
In addition to generously dedicating their time and expertise to their roles on the committee, the members also share a commitment to leading by example and volunteering for MDA programs, such as advocacy, the Ambassador Program, volunteer committees, fundraising programs, and other events. We are pleased to spotlight and give thanks to these incredible individuals for their invaluable contribution to MDA’s mission.
Alan Cohen, Chairman of the Board
“We should all seek opportunities to volunteer, as helping others provides an enormous level of personal satisfaction,” says Alan Cohen. Alan is the Managing Director of The Shoreman Group and serves as the Chairman of the MDA Volunteer Advisory Committee. He is from San Juan, Puerto Rico and became involved with MDA almost 15 years ago. Alan believes that all corporations should have programs that encourage their executives to take an active role with non-profit organization boards. Alan was invited to join the MDA Volunteer Advisory Committee and quickly accepted the opportunity to serve a mission that he is passionate about. Alan finds great joy knowing that his time and dedication to his role with MDA provides assistance to families living with neuromuscular disease and contributes to the acceleration of research in finding life-changing cures.
Chandresh Patel believes that living a meaningful and purposeful life comes from doing things that create a sense of joy and fulfillment. Knowing that his efforts make a difference to the families and volunteers of MDA provides him with both. Chandresh is the Co-Founding and Operating Partner of OnPoint Lab and the father of a child with Duchenne muscular dystrophy (DMD). Originally born in Gujarat, India, he moved to Houston in 1977 and considers himself a Houstonian. Chandresh became involved with MDA shortly after his son’s diagnosis when he was 3 years old. He shares that, for him, the biggest benefits of volunteering with MDA are satisfaction and hope. “Satisfaction of knowing that the efforts we put in result in providing a better experience for the patients and families. For example, seeing the kids’ happy faces during MDA camp, “he says “My son enjoyed his time at camp tremendously and made a few good friends as well. And hope for the future knowing that funds raised for research are being used in an efficient manner to lead to a cure.”
New York City teacher and advocate, Jaime Zelaya, shares that without the MDA, he would not be where he is today. Born with a rare neuromuscular disease, he grew up as part of the MDA family. Through MDA’s advocacy, Jaime has had the opportunity to go the nation’s capital and meet with state senators and members of Congress to advocate for policies that serve individuals with disabilities. “As an advocate, the most significant benefit I’ve received is to support and help others understand their rights in their communities. Many people with disabilities face discrimination on a daily basis and need advocates to help them in their time of need. Being a volunteer galvanizes me to encourage others to do the same,” says Jaime. He believes that one of the greatest benefits of volunteering is that it forges strong community relations and engages individuals to achieve mission and purpose in life.
Lisa Straface is a high school tennis coach and the mother of a child with limb girdle muscular dystrophy (LGMD). Lisa lives in Chicago, Illinois, and she connected with MDA when her son was diagnosed. Initially seeking to learn more about her son’s disease and what she could do to empower him, she quickly became involved in MDA’s mission. Lisa has been volunteering with the MDA for over six years and has established unbreakable bonds with other parents and families. She is moved and motivated by the effort and energy of parents championing for their children and volunteering in their communities to raise money that can contribute to better treatment. “I have been able to witness the mental fortitude of children and adults that have MD, not only do they have the same challenges that you and I face each day, but they have to deal with their own muscle challenges. I want to help the world see how remarkable those with disabilities really are,” Lisa shares.
As a leader in an organization that relies on volunteers, Christopher Young recognizes the value of volunteerism in creating a better future. Chris is the Chief Program Officer at DECA Inc, an organization that seeks 1,000 volunteers each year to help fulfill their mission of preparing emerging leaders and entrepreneurs. Chris lives in Reston, Virginia, but started his relationship with both DECA and MDA as a student in Missouri. His local DECA chapter had an established partnership with MDA and supported a variety of fundraising events. As a DECA staff member, he realized the significant impact that DECA could have by supporting fundraising, volunteering, and advocacy for MDA. One of his most memorable moments was helping organize the first-ever DECA 5K for MDA at the International Career Development Conference in Orlando in 2011. He shares that the greatest reward from volunteering often comes later, when those you’ve impacted find success because of your volunteering efforts. “The benefit for me is the difference you’ve made (when you volunteer),” Chris says.
Strength in unity. Strength in community.
Today, and every day, we are so grateful for these incredible board members and our many volunteers who work tirelessly to support the families that we serve and perpetuate MDA’s important mission.
Looking to get more involved? We welcome your talents as part of the MDA volunteer family. Register as a volunteer for virtual or in person events today: www.mda.org/volunteer and dedicate your time to help empower kids and adults living with neuromuscular diseases.
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