Cystic Fibrosis Foundation - Greater New York Chapter

Check out this premiere item which includes 25,000 American Airlines Miles and a getaway at the location of your choice! Bidding starts at $4,800. Click the link below to place your bid today and check out the rest of our amazing items! Bidding closes tomorrow at noon!
https://auction.cff.org/rockthedock24

Don't forget that our silent auction is now open! You have until Friday at noon to bid on your favorite items! Click the link below to see more and bid virtually: https://auction.cff.org/rockthedock24

The silent auction is now open! Whether you are attending in person or not, anyone can bid on the silent auction and bring home something great! Click the link below for more details on these featured items and more!
https://auction.cff.org/rockthedock24

The silent auction starts today at noon! Whether you are joining us on Friday at Rock the Dock or not, you are invited to bid virtually on our silent auction by clicking the link below! Register now so you do not miss any messages or updates! We will be highlighting our items all week long before the auction closes on Friday at noon! Happy bidding!

https://auction.cff.org/rockthedock24

The Rock the Dock Silent Auction opens TOMORROW! These items will only be available for bidding if you are in attendance on Friday. It is not too late to purchase your ticket by visiting events.cff.org/rtd. Join us as we dance the night away and raise our glasses to a cure!

If you would like to bid virtually, please click the link below and register to check out the items and get all of the updates and notifications: https://auction.cff.org/rockthedock24

We wish everyone a very happy, fun, and safe 4th of July! 😎

Before we jump into the holiday weekend, we wanted to take a moment to reflect on our amazing Great Strides season! None of it would have been possible without our sponsors - thank you all SO much for all of your support!

It’s July! Which means that this month we will be hosting Rock the Dock at Gatsby on the Ocean in Wantagh! We hope you will join us for music, food and drinks as we dance under the moonlight and raise our glasses to a cure for CF! Don’t delay, go to EVENTS.CFF.ORG/RTD to buy your ticket today for the summer event of the season!

Today, teens nationwide will participate in the Foundation’s 16th annual Teen Advocacy Day to share personal stories about life with CF and the impact of infection. They’re asking their members of Congress to ensure the PASTEUR Act passes this year. This legislation will incentivize the development of highly innovative antibiotics to fight deadly infections, bringing effective options into the hands of those patients who need them most. The time is now. Help to amplify their impact by urging your members of Congress to advance the PASTEUR Act: https://act.cff.org/fDhMb4O

Nearly 75 teens — including two dozen living with cystic fibrosis — from across the country will be gathering in Washington, D.C. for the Foundation’s 16th annual Teen Advocacy Day! We can’t wait for them to put a face and name to this disease and shine a spotlight on the need for new and effective antibiotics.

We also are thrilled to have Skylar representing the CF Community and our chapter tomorrow at Teen Advocacy Day!
“I am so excited to go to DC for Teen Advocacy Day on behalf of my older brother Stanley and speak with lawmakers and advocate for issues that affect people with cystic fibrosis!” -Skylar Zolek

We are so excited to have Judah representing the CF Community and our chapter at Teen Advocacy Day on Thursday!
“I am excited to go to DC for this event to contribute to the cause of the CFF and to help my mom and all other families who live with cystic fibrosis.” -Judah Shiffman

We still have some bibs left for the 2025 Paris Marathon - one of the biggest marathons in the world! Fundraising minimum is $2,500 per runner. Please email [email protected] if you are interested in this race or any other races in the 2025 Breathe Team Lineup!

Happy First Day of Summer! We are so excited that we are 36 days away from Rock the Dock and hope to see you all there. Visit events.cff.org/rtd for more information.

Juneteenth is recognized as the day when Union troops reached Galveston, Texas on June 19, 1865, and enforced the Emancipation Proclamation – more than two years after President Lincoln signed the proclamation, marking the official end of slavery in the United States. Texans celebrated Juneteenth beginning in 1866 with community-centric events, such as parades, cookouts, prayer gatherings, historical and cultural readings, and musical performances. Over time, communities have developed their own traditions.

Today, Juneteenth is a federal holiday and an opportunity for all of us to recognize the progress of Black Americans fighting for justice and equality over many generations. It also serves as a reminder of ongoing efforts to foster equity in so many areas of our lives and society today. In pursuit of our mission, the Foundation is committed to advancing equity and inclusion. I hope you will find a special way of marking this national occasion. Thank you for contributing to creating a culture that encourages us all to feel that we belong.

- Dr. Michael Boyle, President & CEO

We are excited to announce a new race for the 2025 Breathe Team Lineup - The Big Sur International Marathon! The Big Sur International Marathon is a point-to-point course run on scenic CA Highway 1 from Big Sur to Carmel the last Sunday each April. Towering redwoods, crashing waves, coastal mountains and verdant pastures are featured on this bucket list course. The centerpiece of the course is the iconic Bixby Bridge, located at the halfway point of the race, where you’ll enjoy the unique site and sound of a tuxedo-wearing concert pianist playing a Yamaha AvantGuard N3 piano.

Join the Breathe Team and fundraise $4,000 to gain guaranteed entry into this highly desired race. Email [email protected] or [email protected] to sign up today!

According to 2023 Patient Registry data, the median predicted age of survival for people with cystic fibrosis born between 2019-2023 is 61.

While we are proud of this continued improvement, we recognize that this longer lifespan does not represent the experience of everyone with CF. We’re working harder than ever to develop transformative treatments for all people with CF and support high-quality, specialized care across our CF care center network.

You have helped us achieve this milestone — but there is much more to do. We will never settle for less than curing CF.

Whether you are a dad, a dad with CF, a CF caregiver, grandpa, volunteer, supporter, and everything in between, we hope you know just how important and loved you are. Have a very happy Father's Day!

We invite you to attend this dance performance on June 21st which is a culmination of Marisa Ballaro's Impact Grant program, CF: Community Footprints. Click the QR code on the image or the link in our bio to purchase a ticket. You can also purchase your ticket at the door. Thank you to Marisa for putting this beautiful program together for the CF community!

For a progressive disease like CF, getting diagnosed and starting high-quality, specialized care as early as possible is critical to staying healthy. Newborn screening is one of the most important tools to help identify babies who may have cystic fibrosis. Though newborn screening for CF is conducted in every state, each state has a different process and may often screen for only a handful of the more than 1,700 CF-causing mutations.

These differences in newborn screening processes can lead to people of color — who are more likely to have rarer mutations that aren’t universally screened — receiving a late CF diagnosis, putting them risk for worse health outcomes. That’s why the Foundation established a newborn screening initiative to assess and improve equity, sensitivity, and timeliness in CF newborn screening to achieve nationwide better (or best) practices and improve health outcomes for all.

The New York Times discussed inequities in newborn screening and shared the stories of two moms of children with CF, Rena Barrow-Wells and Cambrey White. Their stories — and every story from the CF community — helps us raise awareness of the work still needed to ensure all people with CF live long, fulfilling lives.

https://www.nytimes.com/2024/05/29/well/live/cystic-fibrosis-screening.html?u2g=i&unlocked_article_code=1.xk0.E6gm.-4X0bjUwi4gN&smid=url-share

We had such a blast last weekend at Cycle for Life! Thank you to all who rode and to all that came to celebrate at Terra Vite Winery and Vineyard. Whether you’d like to cycle or just join in the winery fun, please save the date for next year’s event which will be even better than the last!

Today is 🏃‍♂️ The CF Foundation’s 2024 Breathe Team is off and running (pun intended), training for the races this fall and participating in local races which raising money to make CF stand for Cured Forever. We are also expanding and excited to offer guaranteed entry into ALL of these amazing races in 2025! Click the link below to indicate any races you may be interested in running next year and a staff member will reach out to you when registration opens for your desired event.

https://www.surveymonkey.com/r/TD7Z38G

Happy Global Running Day to all! Share a pic today with your Breathe Team shirt and tag ! 💙💛

The Cystic Fibrosis Foundation will be featured on the NASDAQ Tower in Times Square on June 5 (6/5) in recognition of 65 Roses Day. If you’re in NYC on Wednesday, keep an eye out!

Have a question following this year's North American Cystic Fibrosis Conference? You're invited to join us TONIGHT, December 5, at 7 p.m. ET, to hear key takeaways from this year's conference from Anna Georgiopoulos, MD, and Traci Kazmerski, MD, and have a chance to ask questions. This event will be moderated by Nicole Kohr, an adult living with cystic fibrosis. Register NOW: https://lnkd.in/eCYH6pmE