{"id":11456,"date":"2019-05-09T11:02:34","date_gmt":"2019-05-09T18:02:34","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11456"},"modified":"2025-12-29T11:03:58","modified_gmt":"2025-12-29T19:03:58","slug":"fundraising-dm-research-family-affair-tim-haylon","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/fundraising-dm-research-family-affair-tim-haylon\/","title":{"rendered":"Fundraising for DM Research, a Family Affair for Tim Haylon"},"content":{"rendered":"
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By the time Tim Haylon launched a Facebook fundraising campaign for his birthday in 2018<\/a>, there was already a long-established Haylon family tradition of financially supporting myotonic dystrophy research.<\/div>\n<\/div>\n
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Tim received a diagnosis of DM1 in 2001 at the age of 40, but by then, he had a long history with the disease without realizing it.<\/p>\n

His father died in 1974 at the age of 62 having been diagnosed as having arthritis. In retrospect, the family believes he was misdiagnosed and had suffered with DM. Tim\u2019s oldest sister was diagnosed with DM in 1985. He knew she had an illness, but it wasn\u2019t until he and one of his brothers was diagnosed in 2001 with DM that he understood this was a hereditary condition. Until then, he had never connected the hand cramping and leg pain he had experienced since his mid-twenties with his sister\u2019s ailment. She died in 2015 at the age of 58.<\/p>\n

A Family Fighting for Care and a Cure<\/h2>\n

The Haylon family tradition of donating to myotonic dystrophy research began with his mother\u2019s bridge group, which long ago decided instead of exchanging birthday gifts during the year that they would make donations to support efforts to understand the DM and advance the development of treatments. When Tim\u2019s sister died, the family set up a fund at the Myotonic\u00a0as a way to direct contributions from friends and family. They also donated her body to researchers at Stanford University who are studying DM.<\/p>\n

Tim\u2019s brother makes donations every month and Tim has turned to Facebook to raise funds on his birthday. The first time he did this in 2018, he set a modest goal of raising $200 and ended up raising $500. This year, he sought to match what last year\u2019s total, and ended up raising $1,000.<\/p>\n

\u201cMore and more people know what I have and have seen the deterioration of my abilities,\u201d said Tim. \u201cSome family, some friends, a lot of my wife friends know I use a cane. I\u2019m in a wheelchair part-time and people want to help as much as possible.\u201d<\/p>\n

Tim, who had been a social worker counseling delinquent youth with mental health issues, had to stop working in June 2018. His job required him to walk a lot on he\u2019s no longer able to stand for more than 20 minutes at a time.<\/p>\n

Lending a helping hand<\/h2>\n

Even though he\u2019s unable to work, he puts the skills he developed as a social worker to good use these days. He convenes a myotonic dystrophy support group in his home town of Worcester, Massachusetts on the campus of College of the Holy Cross. The group meets four times a year and participants travel from New Hampshire, Rhode Island, and throughout Massachusetts to participate.<\/p>\n

\u201cPeople have enjoyed the group. They\u2019ve learned a lot,\u201d he said. \u201cWe have good discussions, and everybody has different stories and different symptoms.\u201d<\/p>\n

The disease has now moved to the next generation of Haylon\u2019s. Though Tim\u2019s oldest son does not have the disease, one daughter has been diagnosed and the other is showing early manifestations of the condition. The family has been fighting with her insurance company to pay for a diagnostic test to confirm she has it. Two of his nieces also have been diagnosed with DM.<\/p>\n

That\u2019s intensified Tim\u2019s interest in helping to do what he can to support the development of new treatments for DM.<\/p>\n

\u201cI know money is needed for research. I don\u2019t think there\u2019s much hope for my generation to get a treatment or a cure, but I\u2019m hoping the next generation, or soon thereafter, will get help,\u201d he said. \u201cMy goal is to keep money coming in so the scientists can keep working.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11458,"template":"","class_list":["post-11456","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11456","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11458"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11456"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}