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Melissa Welin is the co-founder of the Fragile X LINKS Group of Eastern Massachusetts. She and her husband live in Cambridge, MA with their 8 year old son who has the full mutation. Melissa blogs about their lives with Fragile X at www.basicallyfx.com.
Tuesday, April 23 was a proud day for Fragile X. That’s when Denise Devine of the Fragile X Resource Center of Western Massachusetts and my husband, Eric Welin, of the Fragile X LINKS Group of Eastern Massachusetts, stepped onto the field at Fenway Park in Boston, accompanied by our son, Caleb. They stood together behind home plate along with representatives from four other organizations who would be recognized for their efforts in advocacy and improving the lives of people with disabilities from across the Commonwealth.
The ceremony was the culmination of nearly three years of work by the two groups to bring Fragile X Awareness Day to Massachusetts. The effort began in the fall of 2010, when Denise was in contact with her state representative, John Scibak, and his staff. Due to her efforts, Representative Scibak agreed to introduce what became House Bill 843, “An Act Establishing Fragile X Awareness Day,” during the legislative session beginning in January 2011. Denise diligently followed up on the progress of the bill, and in October she received word that a hearing date had been set. The two groups worked to gather letters of support from other families affected by Fragile X and from the Fragile X Clinic at Boston Children’s Hospital. They also persuaded staff members from the pharmaceutical company Seaside Therapeutics to join them in testifying before the committee.
The group apparently made quite an impression. A week later, Representative Scibak called to tell Denise how impressed another representative in attendance had been with the group’s testimony. Scibak noted how untypical it is for anyone to call and compliment such presentations.
Finally, a year after it was first introduced, the bill made it out of committee and was passed by the House. It was quickly submitted to the Senate and passed there as well. On July 27, 2012, the very Friday when many members of the Fragile X community from around the globe were gathered for the 13th International Fragile X Conference in Miami, Governor Deval Patrick signed the bill into law.
Now here our trio was, 11 months after the bill was signed into law and nearly three years after the groundwork was laid, standing behind home plate looking up into the stands. Eric had his hands full managing Caleb’s anxiety, but Denise was clearly giddy with excitement, smiling and waving to her daughter, Kelley, who had accompanied her to the game. When the big moment finally arrived, the three of them walked out onto the grass just in front of home plate, high fiving the Red Sox mascot Wally on the way, as the announcer commended the group and briefly explained what fragile X syndrome is.
The group stood waving into the camera while their images were projected onto the large screen in the park and photographers snapped pictures. Too soon, the ceremony was over and they left the field to watch the game. The Red Sox lost, badly, but that did not diminish the excitement of the evening. The next morning Eric was still in awe: “I can’t believe I stood on the grass at Fenway…”
Well done, Fragile X advocates! You put our cause on yet another state’s calendar and in front of another crowd, helping build the awareness that will benefit us all.