Cystic Fibrosis Foundation - Metro D.C. Chapter

Join us for our last walk of the year on September 7th! Register your team now at https://fightcf.cff.org/site/TR/GreatStrides/78_Metro_DC_Washington_DC?fr_id=10386&pg=entry

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.

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 Mark, [email protected]

Are you looking for a community of young professionals dedicated to growing their networks, making personal connections, and developing professional skills all while making a difference for people with cystic fibrosis? Tomorrow’s Leaders has something for you! Learn more -> www.cff.org/get-involved/tomorrows-leaders

Whether you're an Xtreme Hiker or just like to hike, all are invited to our next training hike is this Sunday, August 11th! Join us for an 8 or 16-mile training hike at Harper's Ferry! Please RSVP with this link https://afasignup.formstack.com/forms/2024xtremehiketraining

Have you registered for ROSE UP?

No matter your hobbies or interests, you can choose to ROSE UP on your own, with family and friends, at home, or online. Choose any activity — whether it’s sports, baking, games, or crafts — the ways you can ROSE UP are endless!

Stumped on what activity to choose? Adam will ROSE UP by running 6.5 miles!

Register today and find out more ways to ROSE UP: https://events.cff.org/roseup

Join us for our first ride of the year at Lone Oak Farm Brewing in Olney, MD! Choose between 15, 30, or 45 miles & celebrate your finish with a post-ride party! Register at https://fightcf.cff.org/site/TR/Cycle/78_Metro_DC_Washington_DC?fr_id=10124&pg=entry

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 Mark Spira, [email protected]

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.

Register today: https://cff.zoom.us/j/95368031762?pwd=OHNuaGR4MU8wbWY2QTk2cEVidXQvUT09

Do you enjoy hiking? Join us for a 11-mile training hike at Washington Monument State Park & Annapolis Rock this Sunday! Please RSVP with this link https://afasignup.formstack.com/forms/2024xtremehiketraining

Join our Xtreme Hikers in Canaan Valley, WV this September as they show just how far they would go for a cure⛰

Register Here: https://fightcf.cff.org/site/TR/Hike/78_Metro_DC_Washington_DC?fr_id=10079&pg=entry

Join us at one or both of our Cycle for Life events! Ride 15, 30, or 45 miles in support of our mission. To register: https://fightcf.cff.org/site/TR/Cycle/78_Metro_DC_Washington_DC?fr_id=10124&pg=entry

Olney Ride - Lone Oak Farm Brewing, Olney, MD on August 24, 2024

Manassas Ride - 2 Silos Brewing Co., Manassas, VA on October 12, 2024

We wish you and your family a Happy Independence Day! Our offices will be closed today and tomorrow, July 5th in observance of the holiday.

Raven’s Rock was a beautiful training hike! Do you want to join our next training hike? RSVP Here: https://afasignup.formstack.com/forms/2024xtremehiketraining

Because of the thick, sticky mucus in their lungs, people with cystic fibrosis face a higher risk for infections, and many rely on antibiotics as part of their regular care. This can lead to infections that are resistant to antibiotics.
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

Created and led by adults with cystic fibrosis, ROSE UP is a fundraising event that brings the entire CF community together and can be done anywhere — whether that is with your family and friends, at home, or online.

Start by registering, choosing any activity of your choice — from expressing your artistic
creativity to pursuing athletic endeavors, or any activity that is meaningful to you. Share how you will ROSE UP on social media and rally your friends and family to donate in support of your efforts.

Register today: https://events.cff.org/roseup

Metro DC Finest nominations are closing soon! Don't miss out on this unique opportunity to add to an individual's professional profile, a stepping stone to future philanthropic endeavors, and a way to grow professionally through new connections and be a part of an important mission.

Visit this link to learn more and nominate yourself or someone you know to join our elite Class of 2024! https://afasignup.formstack.com/forms/metro_dc_finest_honoree_nomination_form_2024

Join us for a 6-mile training hike at Raven's Rock! Please RSVP with this link https://afasignup.formstack.com/forms/2024xtremehiketraining

Today is Juneteenth, a day meant for remembrance, reflection, and celebration.

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, we 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.

May we all remain committed to advancing equity and inclusion.

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.

Thank you to everyone who came out to our Cycle for Life & Xtreme Hike Kick-Off party!

Thank you to all of our Brewer's Ball event sponsors! We are so appreciative of your support.

It's your last chance to register for our Xtreme Hike & Cycle for Life Kick-Off Party! You can RSVP here: https://afasignup.formstack.com/forms/hike_cyclekickoff

Today is the LAST DAY to buy tickets for Brewer's Ball on Friday! Be sure to get your tickets before it's too late: https://events.cff.org/DCBrewersBall/Donate/Tickets

Thank you to all of our local Great Strides Sponsors!

Brewer's Ball at The Wharf is in 2 days! Don't forget to buy your tickets to DC's premier beer festival! Visit the link in our bio to purchase your tickets today. 🍻

Today is 65 Roses Day. There is no cure for cystic fibrosis, and we remember so many CF loved ones lost along the way. This 65 Roses Day, we urge you to join the 65 Roses Club: a dedicated group of monthly donors committed to helping cure cystic fibrosis.
The 65 Roses Club provides a steady, reliable stream of support that helps enable the Foundation to fund innovative research and drug development, and provide high-quality, specialized care to every person with CF.

Show your commitment to helping find a cure by becoming a monthly donor today: https://give.cff.org/65rosesclub/donate?rbref=65RD2303&donate=35&unitid=District%20of%20Columbia%20-%20Metro%20DC

You're invited to our Xtreme Hike & Cycle for Life Kick-Off Party! Join hikers & cyclists for a 3-mile hike or 15-mile ride then come back for a picnic in Rock Creek Park.

To RSVP please fill this form out or email Lexie Hill, [email protected]
https://afasignup.formstack.com/forms/hike_cyclekickoff

Nominate a Finest TODAY! Each year, the Cystic Fibrosis Foundation honors young professionals who are committed to professional growth through a guided fundraising and awareness campaign. We encourage you to self-nominate or nominate a friend, colleague, or family member to be a Finest! Link to nominate: https://tinyurl.com/5cmearrr