werun22q began in 2015 as a running team that wanted to raise awareness for 22q11.2 deletion syndrome and funds for associated 22q charities. We are mamas, dads, aunts, uncles, siblings, grandparents, and friends of someone with 22q. As of 2020, we have had runners from Alabama, California, Colorado, Delaware, Florida, Illinois, Iowa, Louisiana, Maryland, Massachusetts, Michigan, Nebraska, New Hampshire, New Jersey, Ohio, Pennsylvania, and Virginia.
the core belief of Ragnar is doing something together than can never be done alone. Together we can do anything – it’s not just a sentiment on a medal; it’s a true feeling. The women and men of this team believe that together we can make a difference in the lives of the 22q community. We envision a world where no family living with 22q11.2 deletion syndrome feels alone; where their voice is heard, their questions are answered, and where support is offered. Alone I am good; Together we are great.
as our families grow and change, so too did the needs of the 22q community; it is because of the changing dynamic that we have decided to partner with the UC Davis MIND Institute and their one-of-a-kind 22q11.2 Research Center and Clinic (the 22q Healthy Minds clinic). Headed by Dr. Tony Simon and funded by the National Institutes of Health, their mission is to investigate, explain and eventually treat the impairments in cognitive function experienced by children with neurodevelopmental disorders. Anyone who has ever traveled to the Healthy Minds clinic can attest to the feeling of “being home” – indeed, their work is important and necessary to help our children succeed in school and life and grow into happy adults who are integrated into their communities.
#werun22q is proud to be the sponsor of the #werun22q Innovation Fund – a fund that can be used by Dr. Simon and his team where the need is greatest; to support individuals with 22q and their families, and to advance discoveries. This fund is drastically needed and could be used to pay for families’ travel to the clinic, to seed pilot research to prove concepts so the team can then apply for larger, competitively awarded grants for larger studies, and to enable to 22q clinic and research team to involve other specialists in the clinical care and research (for instance, Dr. Simon learned that a neuropsychologist is a vital part of the team for evaluations and recommendations for individuals with 22q; however, involving this specialist in the visit can be challenging due to a number of factors beyond the team’s control).
this fund would allow Drs. Simon and Angkustsiri to leverage grants and budgets by filling gaps (for instance, some grants include travel funds but won’t pay for specific assessments because they aren’t part of the research study. However, while a family is at clinic, the team would want to provide them with as much useful information as possible). The flexibility of this fund enables the 22q team to pivot and act on new, promising opportunities.
in the coming weeks and months, we will share more about our runners, this mission, the 22q Healthy Minds clinic, and the amazing team of researchers, psychologists, medical doctors, and collaborators who are helping to change the world for our children and young adults. We invite you to join us again on this journey – in life, as in Ragnar, there are times when the road is winding and the destination unclear, but if we are doing it together, we’ll get it done.
werun22q 