Happy Spring! May is a big month. Jake turns 20 and its Cystic Fibrosis Awareness Month.
Jake just completed his sophomore year at the Florida Institute of Technology where he majors in Astrophysics. He's happy and healthy and enjoying the Florida sunshine.
As we’ve described in the past, Cystic Fibrosis is a progressive and life-threatening, genetic disease that causes persistent lung infections which limits the ability to breathe, as well as complications with the pancreas and intestines. Since we last updated you, Jake had some minor blips, though (thankfully!) he remains relatively healthy. Although every CF case is unique and treated differently, Jake’s comprehensive, daily treatment plan consists of airway clearance utilizing a vibration vest; inhaled and nebulized medications to expand the airways; and various oral medications, including an average of 50 pills/daily to aid digestion.
The Cystic Fibrosis pipeline of therapies in development includes 14 drugs that actually address the underlying defect at the cellular level. Although these drugs only treat a limited group within the CF community, there are drugs in the pipeline that could be available to 95% of the CF patient population within the next 4-6 years. In fact earlier this year, the third drug to treat the underlying cause of Cystic Fibrosis was approved by the FDA. For the remaining 5 percent, further research and development must be done. National fundraising efforts are yielding incredible discoveries and achievements. However, for the first time ever, the word “CURE” is on the table. The president of the Cystic Fibrosis Foundation says with “gene editing”, it is possible to envision someone with CF going to a clinic, having a procedure performed and leaving without CF - though this is 20-25 years away. Can you imagine that?! It’s everything we’ve been working towards all these years!
As for us, we remain very active. Matt joined the Board of Directors of the Greater New York Chapter of the Cystic Fibrosis Foundation (CFF) and is the Co-chair of the New York State Advocacy Committee. Earlier this year in Washington, DC, Matt joined more than 200 advocates from 47 states that held nearly 400 meetings with members of Congress. We focused on three key initiatives: Providing the National Institutes of Health (NIH) with the funding needed to support new breakthroughs in CF; Giving the Food and Drug Administration (FDA) the resources it needs to swiftly review and approve vital new CF drugs; and Protecting Medicaid, Medicare and other State and Federal Programs. Max will be attending Teen Advocacy Day in Washington, DC for the third time next month to lobby for the same. Danielle has chaired ten creative and successful fundraising events including Costumes for a Cure I-IV, Dance Party of the Decades I-III, and Rockin’ for a Reason I & II and The Luau '17.
Inexplicably, Cystic Fibrosis still receivesNO federal funding. It is up to the CF Families to keep the medical research funded and active. Otherwise, all this incredible work in the pipeline STOPS.
We truly hope you will consider making a donation to Jake’s Team. CFF has a stellar reputation of keeping expenses low, with the majority of dollars raised going directly to programs that support care and research. As a result, CFF currently holds a 4 out of 4 stars rating by Charity Navigator.
Thank you for reading our update and for all your support over the years. Be it a donation to Jake’s Team, a call to one of us or simply thinking about our family, we appreciate it so very much. Have a great summer!
With our sincerest gratitude,
Danielle, Matt, Jake & Max Genova
Please support us!
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 groundbreaking research and medical progress. Your gift is 100-percent tax deductible.
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.