Danbury Mom Chronicles Struggles of Raising Son With Tourette's Syndrome

Abbey Meyers, Danbury resident, past President of the National Organization for Rare Disorders (NORD), has released her new memoir, Orphan Drugs: A Global Crusade.

In her memoir, Meyers chronicles the struggles she had in getting a proper diagnosis for her son, who was eventually diagnosed with Tourette’s syndrome, followed by additional struggles to get treatment option that was safe and effective.

This episode led Abbey on a crusade that would change the entire rare disease community, her representative said in a statement.

Meyers was instrumental getting the Orphan Drug Act of 1983 passed and served as the consumer representative on the National Commission on Orphan Diseases (1986-89), the NIH Human Gene Therapy Subcommittee, the NIH Recombinant DNA Advisory Committee (RAC), the FDA Biological Response Modifiers Committee, and the HHS National Human Research Protections Advisory Committee. She was also an Honorary President of the European Organization for Rare Disorders (EURORDIS) and currently hold the honorary title of President Emeritus of NORD.

“In anticipation of Rare Disease Day on February 29th, Medunik Canada would like to bring to light the hard work and commitment of orphan drug crusaders, like Ms. Meyers,” a representative stated.

“This book of Ms. Meyers’ memoirs is her effort to document the issues that led to enactment of the “Orphan Drug Act of 1983” in the United States. The struggle of patient organizations, medical researchers and the American public stood as a model for the rest of the rare disease world. Eventually many industrialized countries enacted their own orphan drug laws which spurred extraordinary scientific and industrial progress that resulted in new treatments and cures for millions of rare disease patients throughout the world.”

Meyers said, “One day, I wish everyone dealing with the pain and misery of the 7,000 rare disorders will have access to a treatment that will alleviate their symptoms. The reason I wrote this book was to show that individuals did not have the political power to solve this problem, but working together rare disease patients represent millions of people who can be a formidable political force. And the accomplishments of patient led charities in the USA served as a model for the rest of the industrialized world. Together we became the “Global Crusade” for people with rare disorders.”

“Abbey Meyers has inspired change and made an immense impact on the availability of orphan drugs around the world,” said Éric Gervais, Executive Vice-President of Medunik Canada. “For the people suffering from rare diseases, bringing these drugs to the market makes a huge difference, not only in the quality of life, but in life or death. Abbey’s memoirs elegantly walks readers through her fight to invoke change in this underserved space.”

For more information on Orphan Drugs: A Global Crusade, Abbey Meyers and to download the book in its entirety please visit: www.AbbeySMeyers.com. Alternatively, a paperback version of the book can be ordered from Amazon.com.