Expand<\/a><\/p>\nOn Saturday, June 27, Genetic Alliance hosted its Run for Rare 5K benefit in Del Mar. The morning of running, walking, and fundraising was the cumulation of many years of dedication and hard work for Genetic Alliance and its program iHope.<\/p>\n
iHope, which was the main beneficiary, has a mission \u201cto expand access to genetic testing and follow-up care for children and families affected by rare diseases, regardless of social status, income, or geographic location.\u201d<\/p>\n
Rooted in science and fueled by a deep ambition to help children and families, Sharon Terry and Ryan Taft started Genetic Alliance to connect individuals with the technology they knew worked.<\/p>\n
\u201cMy background is in genomics; I was always a very happy academic. Until I met a family that had a child with a rare disease. The father had paid out of pocket to have the child\u2019s genome sequenced in 2011, and at the time that was not a thing. He ended up with so much data, wandering around trying to analyze it. I met them through happenstance,\u201d said Taft.<\/p>\n
When Taft was confronted with the realities of rare childhoods diseases, he knew he could not sit idly by.<\/p>\n
\u201cWhat you quickly learn in the rare disease space is that there are tons of unmet needs, phenomenal people and you just cannot walk away. It is a community that drags you in very quickly,\u201d said Taft.<\/p>\n
The father that Taft met did not want to get off the phone until he agreed to help, and overcome with the urge to do just that, Taft agreed.<\/p>\n
\u201cI did it. It took us about 18 months, but we figured out exactly what was wrong with this boy. My life changed overnight, and I thought to myself \u2018I want to bring this to every kid on the planet who needs it,\u2019\u201d said Taft.<\/p>\n
Taft quickly halted any other work projects and focused his energy on creating a program that would offer solutions to families and individuals.<\/p>\n
\u201cI went to Illumina Biotech, who makes the core DNA sequencing technology,\u201d said Taft.<\/p>\n
When Taft joined the team at Illumina, he knew there was a long road ahead, but he didn\u2019t want to wait.<\/p>\n
\u201cWe started helping patients right away, in 2014. It grew over the next 10 years, and we did about 300 to 500 patients a year. We started in the U.S. and later moved to lower and middle-income countries. We ended up with about 15 clinics, who send samples to Illumina,\u201d explained Taft.<\/p>\n
Eventually, Taft and his team were able to scale the program and move out of Illumina.<\/p>\n
\u201cWe moved away from a single lab to a distributed network of laboratories. We onboarded a ton of laboratories and played matchmaker between the laboratories and the clinics. They thought we were insane, but we knew it would work,\u201d said Taft. \u201cWe understood the local communities, we had built trust. It sounded really risky but we knew the space so well.\u201d<\/p>\n
Since officially opening their doors in 2014, Genetic Alliance has become home to many heartwarming and groundbreaking success stories.<\/p>\n
\u201cWe have stories each week. One of our favorites is a patient in Mexico, this little girl came into a clinic we work with in Tijuana. They knew it was something genetic, it turned out she had a very treatable metabolic disorder. She went from not being able to walk to walking out and playing on the playground outside. She went from not attending school to being in school, she went from not being able to write to writing her name, and the treatment was a ketogenic diet and vitamin B1 supplementation,\u201d explained Taft.<\/p>\n
The story is an example of the physical success when a family finds the root cause of an issue, but another huge aspect to Genetic Alliance\u2019s work is the mental relief families and patients feel.<\/p>\n
\u201cIt now connects them to a community. They\u2019re not alone, because for nearly all of these, even ultra-rare conditions, there\u2019s somebody else out there. Right. But you don\u2019t know how to connect to them, or their family, or their clinician, unless you have that piece of information,\u201d said Taft.<\/p>\n
With no plans of stopping their work anytime soon, the Run for Rare 5K was a cumulation of years of dedication and hard work. Hosted in Del Mar, the day was a celebration of families, patients and the work they have put in.<\/p>\n
\u201cIt was just right time, right place, right partner,\u201d said Taft.<\/p>\n
With a great deal of focus on fundraising and awareness, there was still plenty of time for fun.<\/p>\n
\u201cWe did a few fun things, too. In the lead-up to the race, I was trying to think about what silly thing can I do to kind of get people\u2019s attention? And in the rare disease world, there\u2019s a phrase \u2018Think horses, not zebras.\u2019 That phrase is meant to be like \u2018if you\u2019re you\u2019re a GP and somebody comes to you, and it looks odd, think of the common thing first, not the super rare thing. But we\u2019re all zebras in the rare disease world, so the zebra has become our totem,\u201d said Taft.<\/p>\n
To honor this, Taft ran the race and spent the morning in a head-to-toe zebra costume.<\/p>\n
While iHope was the primary beneficiary of the run, it is just one program of Genetic Alliance, whose mission to serve those with rare diseases remains a through line with all their programs.<\/p>\n
More information on Genetic Alliance and iHope can be found athttps:\/\/geneticalliance.org<\/p>\n","protected":false},"excerpt":{"rendered":"Kids Dash starting line (Courtesy of PacBio) Ryan Taft, Sharon Terry and Dawn Barry (Courtesy of PacBio) Event…\n","protected":false},"author":2,"featured_media":417326,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[28],"tags":[310,311,74,76,75],"class_list":["post-417325","post","type-post","status-publish","format-standard","has-post-thumbnail","category-san-diego","tag-del-mar-times","tag-del-mar-times-news","tag-san-diego","tag-san-diego-headlines","tag-san-diego-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts\/417325","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/comments?post=417325"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts\/417325\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/media\/417326"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/media?parent=417325"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/categories?post=417325"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/tags?post=417325"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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