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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.