also, dr. joshua schiffman does a lot of research on
dogs and elephants
at his lab at the huntsman cancer institute in salt lake city. we humans have one copy of tp53 genes whereas
elephants have about 20
copies, and elephants rarely get cancer.
i don’t know if there will ever be a cure for lfs in my lifetime but there are research and studies taking place worldwide.
what are some of the funding and policy challenges facing the association?
we rely on patients, families and friends affected with lfs for donations. it would be nice to be part of other grants or research studies [and maybe partner with] a known entity or canadian celebrity [to bring more awareness]. i want to open the doors to receive more money so if i’m a patient partner for research or studies, i’m asking that a stipend be given to lfsa canada [from researchers]. i think that’s more common nowadays that it’s written in their budgets if their grants come through that their patient partner group will receive a donation.
the government has put a lot of money toward pediatric cancer and rare disease to be rolled out over the next five years, and lfs children and youth will benefit from that through access to the latest scientific advances, diagnostic tools, therapies and supportive care.
at the end of april, i was invited through cord, the
canadian organization for rare disorders
, along with other rare disease advocacy groups, to parliament hill to meet with mps, tell our stories and help educate them on hereditary and rare cancers. i’ve also personally met with provincial and federal government officials to discuss the lfs community.