Photographic Essay Will Highlight Pittsburgh Man’s Battle with Lou Gehrig’s Disease
Photographs can illuminate certain events that impact people’s lives. Messages depicted in these digital images can vary. Some photos highlight the horrors of war or famine, while others depict the joy of a birth or homecoming. Neil Alexander, who was diagnosed with the neurodegenerative disease amyotrophic lateral sclerosis (ALS) in August 2011, has chosen to use photos to illustrate his battle with this debilitating and deadly disease. He will also use this medium to help spread ALS awareness.
For his awareness efforts, The ALS Association’s Western Pennsylvania Chapter is honoring Alexander and his wife and caregiver, Suzanne, in May during ALS Awareness Month for the annual “ALS Across America” campaign. This national campaign pays tribute to people with ALS, otherwise known as Lou Gehrig’s Disease, and their caregivers as role models. These individuals inspire The Association and the ALS community as they make a positive difference by spreading ALS awareness and by living their lives to the fullest. Individuals with Lou Gehrig’s Disease typically have a survival rate of two to five years from the time of their diagnoses. The disease affects a person’s ability to move, eat, breathe and speak.
Alexander began documenting his life with ALS via pictures in December 2011. The project, titled “A Journey of Strength – the Progression of ALS Over Time,” will contain two sets of photos. One will show Alexander in plain sports clothes and demonstrate the effects Lou Gehrig’s Disease has on his body. In the other set, Alexander will wear the t-shirts of organizations – schools, employers, sports teams and others – that have been a significant source of strength to him throughout his life. Acclaimed Pittsburgh photographer Duane Rieder will document Alexander’s journey with ALS.
“These periodic photographs will shine a light on the devastating physical impact that ALS has on its victims,” said the chapter’s Executive Director Merritt Holland Spier. “It is Neil and
Suzanne’s hope that this unique project will serve as a testament to the ravages of the disease and the need to find a cure.”
Alexander, 46, works as director of corporate services at Hefren-Tillotson, Inc., one of Pittsburgh’s largest investment advisory and financial planning firms. He and Suzanne are parents to two young children, Abby, 10, and Patrick, 8.
As part of ALS Awareness Month, The ALS Association hosts the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. May 13-15. The conference is the single largest gathering of the ALS community and empowers people with ALS and their families with the ability to play an active role in advocating for a treatment and cure through meeting with Members of Congress. This outreach to elected officials has helped to achieve many significant victories for people with ALS from waiving the 24-month Medicare waiting period for people with ALS to improving benefits for military veterans with the disease, who are twice as likely to develop ALS as the general public. The conference also helped lead to the establishment of a National ALS Registry and has generated more than $650 million in funding for ALS research. To learn more about the conference, visit http://www.alsa.org/advocacy/advocacy-day/.
According to Spier, Alexander plans to attend the conference along with staff and volunteers from the Western Pennsylvania Chapter.