I’ve chosen to support the CHAMP1 Research Foundation because my son is 1 of only 51 in the world with this rare genetic condition. He received the diagnosis in 2016 after 7 years of being undiagnosed. I created a Facebook Group and we now have 45 of the families connected worldwide through the group. I have just recently joined the Board on the newly established CHAMP1 Research Foundation as the Community Support Chair which was set up by one of our American CHAMP families.

There are two reasons for my fundraising. The first being the American CHAMP families are meeting at the inaugural CHAMP1 Conference in June 2019. I am hoping to be able to take my son Calum to meet the other families and for us to be able to spend time with them. We also have medical professionals attending to collaborate with the champ1 community.

Secondly, the CHAMP1 Research Foundation has formed a Scientific Advisory Board. There are potential researchers available if our Foundation has funding to cover their research costs. This research would help to fully understand the function of the CHAMP1 gene in order to develop effective treatments and a potential cure for CHAMP1 disorders.

#YearofOurChamps
#CHAMP1ON
#CHAMP1Research