Greetings friends and family. It is that time of year again..... The Poche's annual appeal to raise money and awareness for the Cystic Fibrosis Foundation, CFF.
We have been doing this for a whopping 20 years and have made significant progress in assisting the CFF provide new therapies for Jeffrey and Samantha. There has been many changes to our annual fundraising routine from year to year but one thing remains constant - donations help CF stand for Cure Found.
CF is such a rare disease, therefore in order to provide incentive for biotech and pharmaceutical companies to research new treatments for a cure, the CFF provides financial support to encourage companies to focus on CF and help advance therapies that would be unlikely to move beyond clinical trials. Jeffrey is now 21(has CF), Frank 18 and Samantha 16(has CF) We have seen so much progress since Jeffrey’s diagnosis in 1999.
Presently, Samantha and Jeffrey are taking 7 medications that were funded by the CFF.
There is tremendous news on the horizon for people with Cystic Fibrosis. A new drug, which combines three medications, has proven to increase lung function by 10% in clinical trials. It is on the heels of a release of a medication that Jeffrey and Samantha are presently taking that help them to clear mucus from their lungs more effectively thus reducing the number of exacerbations of sickness and hospital visits. The CFF also announced funding of NTM research this year. NTM, nontuberucolsis mycobacterium, is basically a another lung bug that infects people with compromised lungs. It has caused Jeffrey Jr additional lung damage so medication to address it would be amazing. Samantha has not gotten NTM at this point.
We are hopeful for the new drug to be released for Jeffrey and Samantha as early as late 2019.
We are here at this point in life because of the amazing support you have given our family.
Please join us physically at the Baton Rouge Walk on May 18th. If you are unable to be there with us that day, please consider making a donation to our team.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.