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.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.