Cystic Fibrosis Foundation - Delaware Valley Chapter

Last month we hosted our 2024 Paddle to a Cure, down the shore in Stone Harbor, NJ! Thank you to all of our participants who came out, our sponsors, and community supporters who help make this event possible!

LIMITED-TIME TRIPLE DONATION OPPORTUNITY!! Now thru Oct. 31 Wishes and Dreams for Cystic Fibrosis 501(c)(3), is offering a Two to One match of donations up to $9,999 to the Delaware Valley Chapter’s CF Foundation’s Annual Fund until October 31, or when the $20,000 match is complete, whichever comes first.

For example, if you donate $500, they will match with a gift of $1,000, for a total of $1,500!

Don’t miss out on this exceptional offer to accelerate our mission to cure CF. Donate to our matching gift challenge TODAY: https://on.cff.org/3XD53uh

REMINDER CF Fighters! Send in your ‘Then & Now’ pictures and short statement of how CF research has helped you achieve a milestone or goal for an upcoming Delaware Valley Chapter Fall campaign! You’ll be featured on our social, emails and postcards to CF community members.

To participate, upload your photos and statements to this form by Sept. 13: https://afasignup.formstack.com/forms/wd_then_now_cf_fighter_participation_form


For any questions - contact Melissa Moy at [email protected]

Step up to our stair climb challenge; only two months from today! Join us for the 2024 Philadelphia CF Climb on Saturday, November 9th at Lincoln Financial Field.

Race to win in the timed climb, take in the stadium views with the non-competitive climb option, or come cheer in the stands for your team - there is something for everyone!

Don't wait! The registration fee is currently $40 and will increase to $50 starting 10/1! To get started, visit fightcf.cff.org/philadelphiaclimb to register and start building your team.

Questions? Contact Emma Thornton: [email protected]

It’s National Grandparents’ Day! Today we thank and celebrate all the amazing grandparents who offer their unconditional love and support to members of the cystic fibrosis community! ❤️

Join us for a virtual Grandparents' Day Celebration hosted by the CF Foundation Grampions, on Monday, September 9th at 6:00 p.m. EST. We are so excited to announce that KC White, Chair of the CF Foundation's Board of Trustees, will be the guest speaker, sharing her CF story, as well as how her family has played a vital role in her success. This is an event you don't want to miss!

Register to receive the Zoom link: https://engage.cff.org/grandparentsday

We are just ONE MONTH away from the Inaugural Trike for a Cure! Join us on Saturday, October 5 at the Conshohocken Brewery Tap Room in King of Prussia, PA to experience a day full of fun, competition, and community!

Form a team of four and pedal your way to victory through an exhilarating tricycle race course! Whether you're racing, cheering from the sidelines, or simply enjoying the food and drink, your participation supports our mission to make CF stand for "Cure Found."

Don't wait! To learn more and register, visit: fightcf.cff.org/trike
or contact Jason Brinn: [email protected]

*Race participants must be 16 years of age or older*

Did you know that you can ask to participate in any clinical trial you qualify for, regardless of location? Most trials offer reimbursement for expenses, including travel, lodging, and meals.

Learn more about the logistics of study participation: https://www.cff.org/research-clinical-trials/time-travel-expenses-and-other-logistics

It's our first-ever official Grampions Week! This week, we celebrate our dedicated Grampions and highlight all the ways they make an impact!

A CF Foundation Grampion is a grandperson, or adult 50+, who is passionate about helping those with cystic fibrosis live their best life. The growing Grampions program provides connection, support, community, and volunteer opportunities both locally and nationally.

Interested in learning more about becoming a Grampion? Visit: https://www.cff.org/get.../become-cf-foundation-grampion or contact Geoffrey Harden in the Delaware Valley Chapter: [email protected]

Last month, our Tomorrow's Leaders came together to celebrate Christmas in July! Prior to the event, our dedicated members collected supplies and toys to be delivered to one of our pediatric CF Care Centers, Nemours Children's Hospital in Delaware. Thank you to Nemours for partnering with us on this event, and a big thank you to our Tomorrow's Leaders who brought so many goodies! We can't wait to see how much we can collect next year!

We are always looking for more passionate young professional to join us! If you're interested in learning more about Tomorrow's Leaders, visit: https://www.cff.org/get-involved/tomorrows-leaders

Make-A-Will Month may be concluding, but our Legacy Society Challenge continues on! The generous Delaney Binker Family Cure Cystic Fibrosis Miami Foundation has once again challenged our community to grow the Legacy Society by contributing $1,000 for every new member, up to $65,000, between March 1 and December 31. Making a legacy gift is easy and costs you nothing today! Join today so that people with CF can fulfill dreams of tomorrow.

Learn more by visiting www.cff.org/legacygiving or contacting Geoffrey Harden - [email protected]

Calling all CF Fighters! Send in your ‘Then & Now’ pictures and short statement of how CF research has helped you achieve a milestone or goal for an upcoming Delaware Valley Chapter Fall campaign! You’ll be featured on our social, emails and postcards to CF community members.

To participate, complete this form and upload your photos by Sept. 13 - https://afasignup.formstack.com/forms/wd_then_now_cf_fighter_participation_form

For any questions - contact Development Manager, Melissa Moy at [email protected]

Gather virtually with others at CF Circles: our new hour-long, topic-based small group
discussions. These peer-led discussions provide an opportunity to find validation from
those who understand what you’re going through.

Register now for upcoming discussions — such as Life With CFTR Modulators, Costs of Life With CF, Living as a Black Person With CF, and more:
https://www.cff.org/get-involved/cf-circles

Are you ready to ROSE UP?

This year, we’re thrilled to announce The Delaney Binker Family Cure Cystic Fibrosis
Miami Foundation has kindly offered a $20,000 incentive opportunity! To help spur
fundraising across ROSE UP, beginning August 1, 2024, the first 20 participants who
launch a passion fundraising event on the passion fundraising platform for their ROSE UP campaign and raise $1,000 or more will receive an additional $1,000 contribution from the incentive toward their event to amplify their impact. The incentive runs through December 16, 2024, or until the incentive is met.

Working alongside the CF community, we have driven extraordinary results. But we can’t stop now. Register for ROSE UP, and help us cure cystic fibrosis:
https://events.cff.org/roseup

Named after the pioneering CF researcher and physician, The Paul di Sant’Agnese Legacy Society is a special group of CF Foundation supporters who have made a lasting commitment with a gift in their estate plans.

Many families and friends do this by leaving a $ or % gift to the Cystic Fibrosis Foundation in a will or trust, or by naming the Foundation as a beneficiary in their IRA, 401K, DAF or life insurance policy.

Join our community of Legacy Society members today by visiting: www.cff.org/legacygiving or contact Geoffrey Harden - [email protected]

Thanks to people like you and our national corporate sponsors, AbbVie and Vertex, we have made incredible progress in our search for a cure for cystic fibrosis. We are confident that one day, no one will lose a loved one to CF.

Join our ROSE UP community call, August 13 at 8 p.m. ET to enhance your fundraising skills to advance our mission. During the call, you’ll hear fundraising ideas, tips, and tricks from adults living with cystic fibrosis who serve as our ROSE UP committee members and ambassadors. Don’t miss this opportunity to connect and network with the entire ROSE UP community.

Register: https://bit.ly/3A8FLLi

Join us in celebrating the Integrative Health team at the Children’s Hospital of Philadelphia for being a recipient of one of this year’s Impact Grants! Their program will produce a virtual cooking series tailored for families in the cystic fibrosis community to provide practical strategies for nutritious cooking that meet the dietary needs of the CF community while appealing to the whole family regardless of budget or busy schedules.

“As a practitioner in culinary medicine and cystic fibrosis, I am passionate about harnessing the benefits of food to enhance the lives of patients with cystic fibrosis, contributing to their long-term health and joy of eating through a tailored, quality diet approach.” - Dr. Maria Mascarenhas, pediatric gastroenterologist at Children’s Hospital of Philadelphia

Congratulations to the Integrative Health team at Children’s Hospital of Philadelphia! We are excited to see your program nurture the mind, body, and spirit of the CF community. To be notified of the class schedule, email [email protected].

Read more: https://www.cff.org/news/2024-08/2024-impact-grant-recipients

The second annual Paddle to a Cure is just TWO WEEKS from today!

All paddlers and skill levels are welcome- SUP, prone, kayaks, etc., from recreational beginners to serious racers- we have a distance for you! Paddlers can choose from 5k, 10k and 1-mile distances, with a $30 registration fee and $100 suggested minimum (which will earn you an event t-shirt!). Stick around for the post-race party, featuring food trucks, top finisher and fundraiser awards, and mission speaker!

For more information and to register, visit fightcf.cff.org/njpaddle

Did you know August is National Make-A-Will Month? It’s never too early to plan for the future. An up-to-date estate plan is crucial for managing assets and ensuring that your wishes are honored. It also provides peace of mind, knowing that your loved ones are cared for and that any charitable causes you value are supported.

By adding the Cystic Fibrosis Foundation to your estate plan, you’re not just donating – you’re helping transform lives now, tomorrow, and for generations to come.

Learn more about legacy giving or notify us of your estate plans at www.cff.org/legacygiving or contact our chapter: [email protected]

We have a *NEW DATE* for our inaugural Trike for a Cure! Join us Saturday, October 5 for this one of a kind event!

Register and get your team started: https://bit.ly/4f8Tth9

Introducing📣: TRIKE FOR A CURE

Think tricycles are for kids? Think again! Join us on October 5, 2024 at the Conshohocken Brewery Tap Room in King of Prussia, PA. to experience this inaugural event. It will be a day full of fun, competition, and community!

Form a team of four, or race as an individual, and pedal your way to victory through an exhilarating tricycle race course! The race will test agility, embrace teamwork, and require a great sense of humor! This exciting event isn't just about racing tricycles - it's so much more - whether you're racing, cheering from the sidelines, or simply enjoying the food and drink, your participation supports our mission to make CF stand for "Cure Found."

To learn more and register, visit: https://bit.ly/4f8Tth9
*This event is not for kids, but for the kids at heart! Participants must be 16 years of age or older*

We’re pursuing treatments to help treat the genetic cause of cystic fibrosis. Clinical trials for five early-stage genetic therapies are currently underway. Genetic therapies could benefit everyone with cystic fibrosis.

Visit cff.org/AnnualReport to read more of our highlights throughout the year

Today marks ONE MONTH until the Second Annual Paddle to a Cure, our paddle race open to Standup Paddleboards, Prone Paddleboards, Kayaks, etc. hosted at 81st Street Marina in Stone Harbor, NJ. This event is for both novice recreational paddlers and experienced racers, with a 1 mile fun paddle, a 5k race, and JUST ADDED - a 10k race!!

We hope to see you down the shore on Sunday, August 18!
To register, please visit fightcf.cff.org/njpaddle

Introducing📣: TRIKE FOR A CURE

Think tricycles are for kids? Think again! Join us on October 5, 2024 at the Conshohocken Brewery Tap Room in King of Prussia, PA. to experience this inaugural event. It will be a day full of fun, competition, and community!

Form a team of four, or race as an individual, and pedal your way to victory through an exhilarating tricycle race course! The race will test agility, embrace teamwork, and require a great sense of humor! This exciting event isn't just about racing tricycles - it's so much more - whether you're racing, cheering from the sidelines, or simply enjoying the food and drink, your participation supports our mission to make CF stand for "Cure Found."

To learn more and register, visit: https://bit.ly/4f8Tth9
*This event is not for kids, but for the kids at heart! Participants must be 16 years of age or older*

Are you a high school, college, or graduate student aged 18 or older? Join us for the Tomorrow’s Leaders College Program! This virtual two-week program held Tuesday and Thursday evenings at 7 p.m. ET allows students to build leadership skills, learn the story behind cystic fibrosis care, and network with others while making a difference for the CF community.

Register by July 26 to reserve your spot: https://on.cff.org/3XZhUYr

In 2023, the Cystic Fibrosis Foundation celebrated continued achievements and milestones toward our mission of curing CF. With your support, we are transforming what it means to live with cystic fibrosis.

Visit cff.org/AnnualReport to read our highlights throughout the year.