GREAT STRIDES, a Walk supporting the CF Foundation, will take place for the seventeenth year in Durham on Saturday, April 4, 2020 at Duke University East Campus. We, along with Allison, other families, care providers, friends and spirited supporters will be “making strides” on April 4th, we ask that you support our effort, and the 2020 GREAT STRIDES Walk.
The Durham Walk initiated in 2003, raising $17,000; since, our Walk has raised over $1,000,000. It has grown from a group of ~70 walkers to over 500, with participation from our Duke CF care center, our schools and community, friends and family from afar. We are so thankful for this opportunity to promote awareness and contribute to research that is making a difference.
Allison graduated high school in June 2019 from Riverside High School. In August 2019, we moved her into her dorm at University of South Carolina where she is majoring in Nursing. She has adjusted to college life very well, as well as managing her health and CF regimen of daily vest treatments, breathing treatments and oral medications thoughout the day. She had a successful first semester and seems to love being a South Carolina Gamecock!
Overall, Allison has been fairly healthy other than being hospitalized for 2 weeks in July to receive IV antibiotics and a tune up before heading to college and a few viruses requiring oral antibiotics this past fall.
In September 2019, the U.S. Food and Drug Administration approved Trikafta (elexacaftor/ivacaftor/tezacaftor), the first triple combination therapy available to treat patients who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population. Allison was approved for the medication and began taking it in late October. So far the results of this medication has been incredible for the CF population including Alison. Her return visit to the CF clinic in December, showed a 10% increase in her lung function from August. She has tolerated this medication very welll so far with no side effects.
It has been a challenging and incredible journey since diagnosis March 1, 2001, learning and seeing very encouraging advances over the last 19 years. With continued support, we are confident research will progress at a similar pace and the rarest CF gene mutations will be addressed, including Allison’s.
2020 Goals-help us build on the successes of previous years, raise awareness, continuing our efforts to fund the research for therapies providing a higher quality of life and treat the root cause of CF; let’s advance research to address rare and specific mutations…. We need your support in helping those with CF reach the milestones that many take for granted, and increase the median age of those with CF. Let’s help CF kids and adults breathe easy….
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.