50+ Messages / Page

  Cystic Fibrosis Foundation · [email protected]
June 4, 2020 at 9:02 PM

Will you join us tomorrow?

Register for the virtual event today Dear friend, Are you joining us tomorrow? At 5 p.m. ET, we’ll be gathering for Together: Celebrating 65 Years. Celebrate 65 years of progress and the commitment we share to ensure that CF will stand for Cure Foun…
  Cystic Fibrosis Foundation · [email protected]
May 26, 2020 at 9:32 PM

We’re better together this 65 Roses Day

Join us for a celebration of the CF community, You’re invited to Together: Celebrating 65 Years on Friday, June 5 at 5 p.m. ET. REGISTER NOW This online event will feature voices from the CF community in an hour-l…
  Cystic Fibrosis Foundation · [email protected]
May 21, 2020 at 8:49 PM

Together: a Weekly Community Update

The latest information for May 21, 2020 Thursday, May 21, 2020 Tell the Senate CF Families Need Paid Leave and Medicaid Funding On May 15, the U.S. House of Representatives passed the HEROES Act, the fourth major federal relief…
  Piper Beatty Welsh - Cystic Fibrosis Foundation · [email protected]
May 18, 2020 at 3:37 PM

I can’t wait to connect with you!

Join me for Together: Celebrating 65 Years on June 5 Hi there,I’m Piper Beatty Welsh and I’ll be one of your emcees for Together: Celebrating 65 Years on June 5. If you haven’t heard about it already, this virtual event will be a moment for all of us i…
  Cystic Fibrosis Foundation · [email protected]
May 7, 2020 at 8:49 PM

Together: a Weekly Community Update

The latest information for May 7, 2020 Thursday, May 7, 2020 "In a Minute" with Paula Lomas, M.A.S., RN, CCRPHow can you prepare for your next telehealth appointment? Paula Lomas, M.A.S., RN, CCRP, senior direc…
  Cystic Fibrosis Foundation · [email protected]
May 5, 2020 at 3:34 PM

A special invitation

Join us on June 5 for Together: Celebrating 65 Years Dear Friend, We have achieved so much together in the last 65 years. Today, there are treatments that lead to longer, fuller lives for people with cystic fibrosis, and a strong community that shares …
  David Elin - Cystic Fibrosis Foundation · [email protected]
May 4, 2020 at 4:00 PM

Let's come together

Join us for an update on the Foundation’s policy and advocacy work Dear Advocate, During this unprecedented time, nothing is more important to the Foundation than the health and safety of the cystic fibrosis community. Our work has been driven by …
  Cystic Fibrosis Foundation · [email protected]
May 1, 2020 at 3:28 PM

We’re celebrating you

Share your story with us! This May we celebrate Cystic Fibrosis Awareness Month. While our celebrations this year look a little bit different, the CF community is no stranger to overcoming challenges and remaining stronger together—even from afar. All…
  Cystic Fibrosis Foundation · [email protected]
April 30, 2020 at 9:00 PM

Together: a Weekly Community Update

The latest information for April 30, 2020 Thursday, April 30, 2020 Study on COVID-19 in People With CF PublishedA study published in the Journal of Cystic Fibrosis reports on 40 people with CF across eight countries and r…
  Cystic Fibrosis Foundation · [email protected]
April 23, 2020 at 8:43 PM

Together: a Weekly Community Update

The latest information for April 23, 2020 Thursday, April 23, 2020 Your COVID-19 Questions AnsweredAt ResearchCon 2020, co-chair James Lawlor asked President and CEO Dr. Mike Boyle some of the communi…
  Cystic Fibrosis Foundation · [email protected]
April 20, 2020 at 4:46 PM

Celebrate National Volunteer Week

Share the thanks! Happy National Volunteer Week! From advocating, researching, fundraising, connecting, and lending a helping hand—you inspire and motivate us every day. Without your support, we would not be able to accelerate our research, provi…
  Cystic Fibrosis Foundation · [email protected]
April 16, 2020 at 8:36 PM

Together: a Weekly Community Update

The latest information for April 16, 2020 Thursday, April 16, 2020 Tell Lawmakers: Don’t Disqualify People with CFMany states and health systems are creating guidelines for frontline healthcare workers as they …
  Mary Dwight - Cystic Fibrosis Foundation · [email protected]
April 10, 2020 at 2:10 PM

Tell Congress: We Need Paid Leave

No one should have to choose between their health and their livelihood. Dear Advocate, For lots of people with cystic fibrosis and their circles of support, the COVID-19 pandemic is magnifying existing financial and logistical burdens associated w…
  Cystic Fibrosis Foundation · [email protected]
April 9, 2020 at 8:42 PM

Together: a Weekly Community Update

The latest information for April 9, 2020 Thursday, April 9, 2020 In a Minute with Dr. Mike Boyle"In a Minute" is a video series in which cystic fibrosis experts answer—in one minute—COVID-19 related questions important to…
  Cystic Fibrosis Foundation · [email protected]
April 2, 2020 at 9:28 PM

Together: a Weekly Community Update

The latest information for April 2, 2020 Thursday, April 2, 2020 Social Distancing – Not a New Reality for Our CommunityWhile millions of Americans try to make sense of social distancing as a new reality, the C…
  Cystic Fibrosis Foundation · [email protected]
March 27, 2020 at 3:04 PM

Together: a Weekly Community Update

The latest information for March 27, 2020 Friday, March 27, 2020 You're Invited to Happiness Hour Tonight!Join us in finding joy in the here and now. Everyone in the CF Community is invited to a virtual Communi…
  Cystic Fibrosis Foundation · [email protected]
March 26, 2020 at 7:26 PM

COVID-19 Updates from Michael Boyle, MD, President and CEO

The latest on the CF community and COVID-19 Dear Friend, Please click here for an important video update from Michael Boyle, MD, President and CEO of the CF Foundation, regarding CF Foundation events and resources to support the CF community during the COVID-19 outbreak.…
  Cystic Fibrosis Foundation · [email protected]
March 20, 2020 at 3:19 PM

Register for ResearchCon

Plus a COVID-19 FAQ, VLC archives, and more Community Questions about COVID-19 Do you have questions about COVID-19 and cystic fibrosis? We are regularly updating an on-site FAQ to share the latest recommendations by the Foundation and the CDC. See…
  Michael Boyle, MD - Cystic Fibrosis Foundation · [email protected]
March 16, 2020 at 11:18 PM

Important COVID-19 update

Updated guidance on COVID-19 for the CF community Dear Friend, With the rapid, global spread of the novel coronavirus and COVID-19 infection, it is clear that these are unprecedented times. The CF Foundation cares deeply for the health and well-being of the CF community.…
  Cystic Fibrosis Foundation · [email protected]
March 13, 2020 at 1:03 PM

Virtual VLC starts today!

Join us via livestream Dear Friend, The 2020 Volunteer Leadership Conference livestream starts today at 1 p.m. ET. Join us for this fully virtual experience to hear from others in the CF community, get the latest medical and scientific updates, and mor…
  Michael Boyle. M.D. - Cystic Fibrosis Foundation · [email protected]
March 11, 2020 at 11:56 PM

COVID-19 Preparedness and the CF Community

Dear Friend, We take our responsibility to the CF community seriously. For the past few weeks, the CF Foundation has been closely monitoring the spread of COVID-19 throughout the United States, following guidance from the CDC and local health authorities, and consulting …
  Cystic Fibrosis Foundation · [email protected]
March 10, 2020 at 3:43 PM

Join us this Friday

Register now for the VLC 2020 livestream! Dear Friend, We wouldn’t be where we are today without you, and together, we are entering a new era in cystic fibrosis. Join us for the virtual 2020 Volunteer Leadership Conference (VLC) on Friday, March 13 f…
  Cystic Fibrosis Foundation · [email protected]
February 28, 2020 at 5:54 PM

Register for the VLC 2020 livestream

Hear success stories and tips from our volunteers The 2020 Volunteer Leadership Conference will take place March 13 - 14. Join us virtually to hear success stories from our volunteers, the latest medical and scientific updates, and more. You can also a…
  David Elin - Cystic Fibrosis Foundation · [email protected]
February 27, 2020 at 6:35 PM

Tell Congress: We need new antibiotics today!

Join our Online Day of Action Dear Advocate, Each year, 2.8 million Americans acquire serious infections caused by antibiotic-resistant bacteria and 35,000 of them die as a result. People living with cystic fibrosis face the heighted risk of lif…
  Cystic Fibrosis Foundation · [email protected]
February 20, 2020 at 4:13 PM

Great Strides registration is open!

Plus research opportunities for CFRD, the latest podcast and more Great Strides Registration is Now OpenHave you registered for Great Strides 2020? If not, now is the perfect time to get started! You can also take the next step in your Great Stride…
  Cystic Fibrosis Foundation · [email protected]
February 14, 2020 at 4:23 PM

Make this Valentine’s Day extra sweet

There’s so much we can accomplish together! Valentine's Day is the perfect time to say thank you for all you do for people living with cystic fibrosis! You can show your love all year long by joining the 65 Roses® Club and becoming a monthly dono…
  Cystic Fibrosis Foundation · [email protected]
January 17, 2020 at 5:06 PM

Advocate: You spoke and lawmakers listened

See the progress we made in 2019 and kick start 2020 Dear Advocate, 2019 was a momentous year for the cystic fibrosis community. Thanks to your tireless work, we remained steadfast in our commitment to educate decision-makers on key issues that impa…
  Cystic Fibrosis Foundation · [email protected]
January 15, 2020 at 8:37 PM

2020 Impact Grants are now open

Plus information on procedural anxiety, Tomorrow's Leaders Day and more 2020 Impact Grants Now OpenDo you have an idea for a project that empowers and engages the cystic fibrosis community? Impact Grants provide up to $10,000 per year to individual…
  Cystic Fibrosis Foundation · [email protected]
January 9, 2020 at 8:43 PM

A message from our President and CEO

Hear Mike Boyle share our strategic vision for the future Dear Friend, We are entering a new era in cystic fibrosis. Working alongside the CF community for 65 years, the Cystic Fibrosis Foundation has achieved unprecedented advances in the treatment and care of CF. Our…
  Cystic Fibrosis Foundation · [email protected]
January 1, 2020 at 2:16 AM

There’s still time

Celebrate with us before midnight tonight! Dear Friend, As 2019 comes to a close, a new era is just beginning. 2020 promises to bring advances in care, ambitious research, and new hope for all people living with cystic fibrosis. Friend, j…
  Cystic Fibrosis Foundation · [email protected]
December 31, 2019 at 3:33 PM

In the New Year...

Let’s keep the momentum going Dear Friend, In 2019 we saw remarkable progress in the fight to end cystic fibrosis, including the approval of a triple-combination therapy and the promise of new, ambitious research through the Path to a Cure. All this w…
  Cystic Fibrosis Foundation · [email protected]
December 30, 2019 at 6:51 PM

Your 2019 update

This holiday season, we’re thankful for you! Dear Friend, This holiday season, I want to take a moment to celebrate all that we have accomplished together in the fight to end cystic fibrosis. Because of people like you, there have been tremendous steps forward in our wo…
  Cystic Fibrosis Foundation · [email protected]
December 27, 2019 at 4:40 PM

Tears of joy and heartache

The day is coming for people like Shelby Dear Friend, "Do whatever you can to protect your lungs. The day is going to come when there will be something to change your life.” Shelby Luebbert clearly remembers the words of hope…
  David Elin - Cystic Fibrosis Foundation · [email protected]
December 16, 2019 at 6:33 PM

Deadline: Congress must pass federal spending bills

Fight for Funding for NIH and FDA Dear Advocate, Congress must pass federal spending bills before December 20. Ensuring there is appropriated funding for the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) is a…
  Cystic Fibrosis Foundation · [email protected]
December 12, 2019 at 5:00 PM

It’s always shining stars

You make a great life possible for kids like Carmine Dear Friend, Carmine is always dancing. Just about any tune, even the sound of the doorbell, can inspire the one-and-a-half year old. He’s also a fan of Mickey Mouse, st…
  David Elin, Cystic Fibrosis Foundation · [email protected]
December 9, 2019 at 7:35 PM

CF Advocacy in 2019

See where we’ve been and where we’re going Dear Advocate, What a year 2019 has been! With the 30th anniversary of the CF gene discovery, the approval of Trikafta™, and the Path to a Cure announcement, we have much to celebrate – and much to look …
  Cystic Fibrosis Foundation · [email protected]
December 4, 2019 at 5:04 PM

The results are in!

Thank you for your support this Giving Tuesday Dear Friend, We did it! Together, we surpassed our goal of $250,000 raised for the CF Foundation on Giving Tuesday. With the generous matching gift provided by the Stremick family, we raised well over half a mill…
  Cystic Fibrosis Foundation · [email protected]
December 3, 2019 at 7:59 PM

We’re so close

Will you help us get there? Dear Friend There's still time to unlock our Giving Tuesday match! We’re so close to meeting the $250,00 matching gift. Every donation you make today will be matched, dollar for dollar, until we reach our goal. Friend, we’…
  Cystic Fibrosis Foundation · [email protected]
December 3, 2019 at 2:28 PM

Your impact, doubled

Have your gift matched for Giving Tuesday! Dear Friend Ella is a vibrant and active 14-year-old who enjoys dance, soccer, swimming, taking pictures of her cousins and friends, and cooking with her grandmother, Nancy. In between her busy schedule and ke…
  Cystic Fibrosis Foundation · [email protected]
December 2, 2019 at 4:51 PM

Something extra special

Help us go twice as far this Giving Tuesday Dear Friend Join us in celebrating all the progress made this year and planting hope for the years to come. This Giving Tuesday, gifts will be matched, dollar-for-dollar, up to $250,000. The Foundation funds…
  Cystic Fibrosis Foundation · [email protected]
November 22, 2019 at 6:03 PM

Learn more about research progress

Plus Great Strides registration and Path to a Cure Learn How the CF Community is Shaping ResearchJoin us for a free Research Progress webinar on Tuesday, December 10. Hear an overview of the full spectrum of research the CF Foundation is supporting…
  Cystic Fibrosis Foundation · [email protected]
November 21, 2019 at 5:03 PM

Infection Research Initiative: One year later

Learn more about our progress in infection research Dear Friend, November marks the one-year anniversary of the launch of the Infection Research Initiative. Through this initiative, the Foundation has committed at least $100 million to address the chronic and intractabl…
  Cystic Fibrosis Foundation · [email protected]
October 31, 2019 at 7:35 PM

We’re about to go live

NACFC starts today Your opportunity to hear about the latest advancements in cystic fibrosis research and care is here! Join us today at 4:30 p.m. CT / 5:30 p.m. ET for Plenary 1 from the North American Cystic Fibrosis Conference (NACFC). …
  Cystic Fibrosis Foundation · [email protected]
October 30, 2019 at 10:25 AM

Announcing the Path to a Cure

CF Foundation announces $500 million Path to a Cure Dear Friend, The future of CF has never looked brighter. The CF Foundation’s relentless pursuit of better todays and more tomorrows for people with CF, combined with the efforts of our extraordinary …
  Cystic Fibrosis Foundation · [email protected]
October 23, 2019 at 3:11 PM

Webinar on triples

Join us Friday to learn more about the announcement Dear Friend, On Monday, we shared the exciting news that the FDA has approved TRIKAFTA™ for people with cystic fibrosis age 12 and older who have at least one copy of the F508del mutation. With the introduction of this…
  Cystic Fibrosis Foundation · [email protected]
October 21, 2019 at 9:18 PM

BREAKING NEWS: FDA Approves Triple Combination!

FDA approves new highly effective treatment for the underlying cause of CF Dear Friends, Today marks a tremendous breakthrough and exciting news for people with cystic fibrosis. The FDA announced its approval of TRIKAFTA, a new, highly effective CFTR modulator therapy …
  David Elin, Cystic Fibrosis Foundation · [email protected]
October 21, 2019 at 3:19 PM

What are you doing Wednesday?

Learn more about our advocacy work to help CF stand for Cure Found Dear Advocate, Ever wonder how your advocacy helps move the needle on research and development? Join us Wednesday, October 23 at 1:00 PM ET for a webinar to learn more about the F…
  Cystic Fibrosis Foundation · [email protected]
October 17, 2019 at 5:00 PM

Hear the latest in CF research and care from NACFC

Check out the schedule and register today Dear Friend. The North American Cystic Fibrosis Conference (NACFC) brings together researchers and health care professionals from across disciplines to discuss the latest developments in cystic fibrosis res…
  Cystic Fibrosis Foundation · [email protected]
October 16, 2019 at 6:13 PM

Tips for open enrollment

Plus the latest research news, getting social without oversharing, and more Navigate Open Enrollment with CompassChoosing the right health insurance plan can be complex, but CF Foundation Compass can help! You can contact a case manager for one-on-…
  Cystic Fibrosis Foundation · [email protected]
September 13, 2019 at 4:17 PM

Get your IPC Passport

Plus BreatheCon, the O'Donnell's family story, and more on lung transplant Register for BreatheCon!Come together with other people living with CF to discuss topics unique to you! BreatheCon is a free, online event just for adults with cystic fibros…