Cystic Fibrosis Foundation - Delaware Valley Chapter, Lehigh Valley

Cystic Fibrosis Foundation - Delaware Valley Chapter, Lehigh Valley The Delaware Valley - Lehigh Valley Chapter is helping to advance the Cystic Fibrosis Foundation’s mission to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives.

The Cystic Fibrosis Foundation is committed to finding new therapies and ultimately a cure for CF. Cystic Fibrosis Foundation - Northeastern Pennsylvania Chapter
1541 Alta Drive
Suite 204
Whitehall, PA, 18052

The Cystic Fibrosis Foundation is committed to finding new therapies and ultimately a cure for CF. Cystic Fibrosis Foundation - Northeastern Pennsylvania Chapter
1541 Alta Drive
Suite 204
Whitehall, PA, 18052

Operating as usual

It’s time to meet another Finest Honoree! Today, meet Audra Kahr! Audra is the Chief Financial Officer, Chief Operating ...
10/25/2021

It’s time to meet another Finest Honoree! Today, meet Audra Kahr! Audra is the Chief Financial Officer, Chief Operating Officer and Treasurer at Cedar Crest College. She is proud to live and work in the Lehigh Valley and has a true passion for what she does. In honor of her distinguished work, she has won multiple awards and we are honored to be celebrating her this year at our No Show Gala. To learn more about Audra and to support her please visit: https://finest.cff.org/lehighvalley/AudraKahr.

It’s time to meet another Finest Honoree! Today, meet Audra Kahr! Audra is the Chief Financial Officer, Chief Operating Officer and Treasurer at Cedar Crest College. She is proud to live and work in the Lehigh Valley and has a true passion for what she does. In honor of her distinguished work, she has won multiple awards and we are honored to be celebrating her this year at our No Show Gala. To learn more about Audra and to support her please visit: https://finest.cff.org/lehighvalley/AudraKahr.

Open enrollment starts soon. Compass case managers are here to help you compare health insurance plan options that best ...
10/24/2021
Connect With Compass

Open enrollment starts soon. Compass case managers are here to help you compare health insurance plan options that best meet the needs of you and your family. Contact Compass today to connect with a case manager for one-on-one, personalized assistance.

https://www.cff.org/Assistance-Services/Compass-Service-Request/

Cystic Fibrosis Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.

Join us on Wednesday, October 27th at 2:00pm for our final Tomorrow’s Leaders Learning Track Session of the year, Advoca...
10/23/2021

Join us on Wednesday, October 27th at 2:00pm for our final Tomorrow’s Leaders Learning Track Session of the year, Advocacy in Action: the PASTEUR Act! A shortage of effective antibiotics puts the world at risk for future pandemics. Antimicrobial resistance (AMR) is a concern for people with cystic fibrosis, as well as the nearly 35,000 Americans that die of antibiotic resistant infections each year.
We invite you to learn how you can directly help the Cystic Fibrosis Foundation create change on our final learning track, “Advocacy in Action: The PASTEUR Act.” Hear from experts to discover how the CF Foundation’s involvement with the PASTEUR Act became a public interest topic, what it means for the CF community, and how you can get involved.

Register today: https://tomorrowsleaders.cff.org/track5

Join us on Wednesday, October 27th at 2:00pm for our final Tomorrow’s Leaders Learning Track Session of the year, Advocacy in Action: the PASTEUR Act! A shortage of effective antibiotics puts the world at risk for future pandemics. Antimicrobial resistance (AMR) is a concern for people with cystic fibrosis, as well as the nearly 35,000 Americans that die of antibiotic resistant infections each year.
We invite you to learn how you can directly help the Cystic Fibrosis Foundation create change on our final learning track, “Advocacy in Action: The PASTEUR Act.” Hear from experts to discover how the CF Foundation’s involvement with the PASTEUR Act became a public interest topic, what it means for the CF community, and how you can get involved.

Register today: https://tomorrowsleaders.cff.org/track5

It's Finest Friday! Over the next few days we will be introducing you to our 2021 Lehigh Valley’s Finest Honorees. These...
10/22/2021

It's Finest Friday! Over the next few days we will be introducing you to our 2021 Lehigh Valley’s Finest Honorees. These wonderful young professionals are all committed to raising funds and awareness for CFF. Each honoree will be honored for their professional accomplishments and distinguished work in our community during our virtual No Show Gala on Friday, November 5th. Today, meet Sarah Heimbach! Sarah is the Assistant District Attorney in the Bucks County District Attorney’s Office. After originally studying Wildlife Biology, Sarah made a career change to Law and makes a true difference in our community each day, and we are honored to celebrate her this year. To learn more about Sarah and to support her please visit: https://finest.cff.org/lehighvalley/heimbach.

It's Finest Friday! Over the next few days we will be introducing you to our 2021 Lehigh Valley’s Finest Honorees. These wonderful young professionals are all committed to raising funds and awareness for CFF. Each honoree will be honored for their professional accomplishments and distinguished work in our community during our virtual No Show Gala on Friday, November 5th. Today, meet Sarah Heimbach! Sarah is the Assistant District Attorney in the Bucks County District Attorney’s Office. After originally studying Wildlife Biology, Sarah made a career change to Law and makes a true difference in our community each day, and we are honored to celebrate her this year. To learn more about Sarah and to support her please visit: https://finest.cff.org/lehighvalley/heimbach.

It’s not too late to register for our national Breath of Life Celebration TONIGHT at 8 p.m. ET! Enjoy performances by Vi...
10/21/2021

It’s not too late to register for our national Breath of Life Celebration TONIGHT at 8 p.m. ET! Enjoy performances by Victoria Shaw and hear inspiring stories from adults living with cystic fibrosis, including Stacy Motenko Carmona and Nick Kelly, along with other special guests.

Register here: https://events.cff.org/nationalbreathoflife

It’s not too late to register for our national Breath of Life Celebration TONIGHT at 8 p.m. ET! Enjoy performances by Victoria Shaw and hear inspiring stories from adults living with cystic fibrosis, including Stacy Motenko Carmona and Nick Kelly, along with other special guests.

Register here: https://events.cff.org/nationalbreathoflife

Today is the last day to purchase VIP Wine Tasting Experience tickets for our No Show Gala! Get yours here: https://fine...
10/19/2021

Today is the last day to purchase VIP Wine Tasting Experience tickets for our No Show Gala! Get yours here: https://finest.cff.org/lehighvalley/Donate/Tickets

Our VIP experience package will include three bottles of wine (2019 White Standard, 2018 Harbinger, and a Spiced Apple) from Chaddsford Winery in Chaddsford, PA and three chocolate truffles from Eclat Chocolates in West Chester, PA. The package will be delivered to your home and a virtual tasting experience hosted by the VP/General Manager of Chaddsford Winery will be held on Friday, November 5th at 6:45pm prior to our virtual gala viewing party.

Please Note:
* VIP experience benefits should be delivered to individuals 21 and over.
* VIP experience packages can only be delivered to addresses in Pennsylvania.
* Deadline to purchase VIP Experience package is Tuesday, October 19th
* Purchasing VIP experience will also register the purchaser for the virtual event and auction.

Today is the last day to purchase VIP Wine Tasting Experience tickets for our No Show Gala! Get yours here: https://finest.cff.org/lehighvalley/Donate/Tickets

Our VIP experience package will include three bottles of wine (2019 White Standard, 2018 Harbinger, and a Spiced Apple) from Chaddsford Winery in Chaddsford, PA and three chocolate truffles from Eclat Chocolates in West Chester, PA. The package will be delivered to your home and a virtual tasting experience hosted by the VP/General Manager of Chaddsford Winery will be held on Friday, November 5th at 6:45pm prior to our virtual gala viewing party.

Please Note:
* VIP experience benefits should be delivered to individuals 21 and over.
* VIP experience packages can only be delivered to addresses in Pennsylvania.
* Deadline to purchase VIP Experience package is Tuesday, October 19th
* Purchasing VIP experience will also register the purchaser for the virtual event and auction.

Have you registered yet for our science update?  We’re extremely proud of the work being done in research and scientific...
10/18/2021

Have you registered yet for our science update? We’re extremely proud of the work being done in research and scientific advancements toward our ultimate goal of making CF stand for Cure Found.

Join us THIS Thursday, October 21st at 6:30pm and two guest presenters, Dr. Jonathan Spahr, Pediatric Pulmonologist and Sarah Reed, Genetics Counselor, from the Geisinger Medical Center CF Care Center as we highlight some recent advancements in the medical field and preview where cystic fibrosis research is going.

Email Brendan Demmy at [email protected] to RSVP today and the link to join! See you Thursday!

Have you registered yet for our science update? We’re extremely proud of the work being done in research and scientific advancements toward our ultimate goal of making CF stand for Cure Found.

Join us THIS Thursday, October 21st at 6:30pm and two guest presenters, Dr. Jonathan Spahr, Pediatric Pulmonologist and Sarah Reed, Genetics Counselor, from the Geisinger Medical Center CF Care Center as we highlight some recent advancements in the medical field and preview where cystic fibrosis research is going.

Email Brendan Demmy at [email protected] to RSVP today and the link to join! See you Thursday!

Have you purchased your tickets for our VIP Wine Tasting Experience?! You have until Tuesday, October 19th! It's a fun n...
10/17/2021

Have you purchased your tickets for our VIP Wine Tasting Experience?! You have until Tuesday, October 19th! It's a fun night you don't want to miss on November 5th at 6:45pm right before the No Show Gala viewing party! To purchase the VIP experience, visit: https://finest.cff.org/lehighvalley/Donate/Tickets

Our VIP experience package will include three bottles of wine (2019 White Standard, 2018 Harbinger, and a Spiced Apple) from Chaddsford Winery in Chaddsford, PA and three chocolate truffles from Eclat Chocolates in West Chester, PA. The package will be delivered to your home and a virtual tasting experience will be hosted by the VP/General Manager of Chaddsford Winery.

Please Note:
*VIP experience benefits should be delivered to individuals 21 and over.
*VIP experience packages can only be delivered to addresses in Pennsylvania.
*Deadline to purchase VIP Experience package is Tuesday, October 19th.
*Purchasing VIP experience will also register the purchaser for the virtual event and auction.

Have you purchased your tickets for our VIP Wine Tasting Experience?! You have until Tuesday, October 19th! It's a fun night you don't want to miss on November 5th at 6:45pm right before the No Show Gala viewing party! To purchase the VIP experience, visit: https://finest.cff.org/lehighvalley/Donate/Tickets

Our VIP experience package will include three bottles of wine (2019 White Standard, 2018 Harbinger, and a Spiced Apple) from Chaddsford Winery in Chaddsford, PA and three chocolate truffles from Eclat Chocolates in West Chester, PA. The package will be delivered to your home and a virtual tasting experience will be hosted by the VP/General Manager of Chaddsford Winery.

Please Note:
*VIP experience benefits should be delivered to individuals 21 and over.
*VIP experience packages can only be delivered to addresses in Pennsylvania.
*Deadline to purchase VIP Experience package is Tuesday, October 19th.
*Purchasing VIP experience will also register the purchaser for the virtual event and auction.

Hear from Kayler Young, a mother and wife, whose children and husband were diagnosed with CF. Read her story about how s...
10/13/2021
How Three CF Diagnoses Changed My World

Hear from Kayler Young, a mother and wife, whose children and husband were diagnosed with CF. Read her story about how she went from knowing nothing about cystic fibrosis, to having the three most important people in her life being diagnosed with the disease.

https://www.cff.org/CF-Community-Blog/Posts/2021/How-Three-CF-Diagnoses-Changed-My-World/

I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.

Join us for a beautiful evening on October 21st at 8PM EST for the Cystic Fibrosis Foundation's virtual National Breath ...
10/11/2021

Join us for a beautiful evening on October 21st at 8PM EST for the Cystic Fibrosis Foundation's virtual National Breath of Life Celebration. It will be a special evening to unite and enjoy guest appearances from familiar faces and beloved entertainers.

On this night, we will honor Rich Mattingly, former COO of the CF Foundation whose dedication led to extraordinary progress for those with cystic fibrosis. Together, we will get one step closer to making CF Stand for Cure Found.

For more information please visit: https://events.cff.org/nationalbreathoflife

Join us for a beautiful evening on October 21st at 8PM EST for the Cystic Fibrosis Foundation's virtual National Breath of Life Celebration. It will be a special evening to unite and enjoy guest appearances from familiar faces and beloved entertainers.

On this night, we will honor Rich Mattingly, former COO of the CF Foundation whose dedication led to extraordinary progress for those with cystic fibrosis. Together, we will get one step closer to making CF Stand for Cure Found.

For more information please visit: https://events.cff.org/nationalbreathoflife

Our 2021 No Show Gala, is a virtual event where attendees will have the opportunity to bid on auction items and make bid...
10/08/2021
Lehigh Valley's Finest Gala

Our 2021 No Show Gala, is a virtual event where attendees will have the opportunity to bid on auction items and make bid for a cure donations.

Join us virtually on Friday, November 5th at 7:30pm. Our 2021 auction will open Friday, November 5th at 8:00am and will close on Tuesday, November 9th at 7:00pm. A recording of the program will also be available.

*NEW THIS YEAR!* VIP Wine Tasting Experience – November 5th at 6:45pm

Our VIP experience package will include three bottles of wine (2019 White Standard, 2018 Harbinger, and a Spiced Apple) from Chaddsford Winery in Chaddsford, PA and three chocolate truffles from Eclat Chocolates in West Chester, PA. The package will be delivered to your home and a virtual tasting experience hosted by the VP/General Manager of Chaddsford Winery will be held on Friday, November 5th at 6:45pm prior to our virtual gala viewing party.

Please Note:
*VIP experience benefits should be delivered to individuals 21 and over.
*VIP experience packages can only be delivered to addresses in Pennsylvania.
*Deadline to purchase VIP Experience package is Tuesday, October 19th.
*Purchasing VIP experience will also register the purchaser for the virtual event and auction.

To purchase the VIP experience, register for the virtual event or learn more about the No Show Gala, visit: https://finest.cff.org/lehighvalley?_ga=2.253033737.1652716134.1633355180-1239586466.1627396656

Help support Cystic Fibrosis Foundation today!

At the CF Foundation, we’re extremely proud of the work being done in research and scientific advancements toward our ul...
10/07/2021

At the CF Foundation, we’re extremely proud of the work being done in research and scientific advancements toward our ultimate goal of making CF stand for Cure Found.

Join us on Thursday, October 21st at 6:30pm and two guest presenters, Dr. Jonathan Spahr, Pediatric Pulmonologist and Sarah Reed, Genetics Counselor, from the Geisinger Medical Center CF Care Center as we highlight some recent advancements in the medical field and preview where cystic fibrosis research is going.

Email Brendan Demmy at [email protected] to RSVP today and the link to join! We hope to see you there!

At the CF Foundation, we’re extremely proud of the work being done in research and scientific advancements toward our ultimate goal of making CF stand for Cure Found.

Join us on Thursday, October 21st at 6:30pm and two guest presenters, Dr. Jonathan Spahr, Pediatric Pulmonologist and Sarah Reed, Genetics Counselor, from the Geisinger Medical Center CF Care Center as we highlight some recent advancements in the medical field and preview where cystic fibrosis research is going.

Email Brendan Demmy at [email protected] to RSVP today and the link to join! We hope to see you there!

You're invited! Join the Delaware Valley community, IN-PERSON, for our 34th Annual CF Climb on Saturday, November 20th a...
10/05/2021

You're invited! Join the Delaware Valley community, IN-PERSON, for our 34th Annual CF Climb on Saturday, November 20th at Lincoln Financial Field!

CF Climb will look a little different this year, due to COVID-19 safety protocols. Participants will check-in and begin their climb on a rolling basis. Stay tuned for more details about the current protocols. Contact Jason Brinn at [email protected] with any event questions!

Register now: https://fightcf.cff.org/site/TR/Climb/141_Delaware_Valley_Philadelphia?pg=entry&fr_id=87

You're invited! Join the Delaware Valley community, IN-PERSON, for our 34th Annual CF Climb on Saturday, November 20th at Lincoln Financial Field!

CF Climb will look a little different this year, due to COVID-19 safety protocols. Participants will check-in and begin their climb on a rolling basis. Stay tuned for more details about the current protocols. Contact Jason Brinn at [email protected] with any event questions!

Register now: https://fightcf.cff.org/site/TR/Climb/141_Delaware_Valley_Philadelphia?pg=entry&fr_id=87

Happy October! Here is our October bucket list, what's yours?
10/01/2021

Happy October!

Here is our October bucket list, what's yours?

Happy October!

Here is our October bucket list, what's yours?

The final Tomorrow’s Leaders learning track of 2021, “The Power of Advocacy,” launches October 5, at 2p.m. EST. The firs...
09/30/2021

The final Tomorrow’s Leaders learning track of 2021, “The Power of Advocacy,” launches October 5, at 2p.m. EST. The first session, “Basics of Advocacy, Government, and Networking" will provide the fundamental knowledge needed to understand advocacy at local and state levels, how to engage your network to promote change, and available opportunities to get involved with CF Foundation advocacy initiatives.
Register today: https://tomorrowsleaders.cff.org/track5

The final Tomorrow’s Leaders learning track of 2021, “The Power of Advocacy,” launches October 5, at 2p.m. EST. The first session, “Basics of Advocacy, Government, and Networking" will provide the fundamental knowledge needed to understand advocacy at local and state levels, how to engage your network to promote change, and available opportunities to get involved with CF Foundation advocacy initiatives.
Register today: https://tomorrowsleaders.cff.org/track5

Address

600 Corporate Circle, Suite 103
Harrisburg, PA
17110

General information

Posting Policy for the Cystic Fibrosis Foundation The Cystic Fibrosis Foundation – Northeastern Pennsylvania Chapter welcomes participation on our page and we encourage you to interact with us often. It is our goal to provide those in the CF community an opportunity to learn more about the local events and activities of our chapter. Individual medical questions are best answered by your CF doctor. Please use caution when searching for health information online, and always consult your doctor before making changes to your or your child’s treatment regimen. You should not rely on information posted on Facebook to suggest a course of treatment for any medical condition nor should you disregard medical advice from your doctor or deviate from any prescribed treatment program because of what you read on Facebook. Please note: giving away, sharing or selling medication or medical equipment that requires a prescription is against the law. To protect your own privacy and the privacy of others, please do not include phone numbers, mailing addresses or e-mail addresses in your posting. You participate at your own risk, taking personal responsibility for your comments, your username and any information provided. This is a public site and visitors do not have to be a member of Facebook to view comments posted to this page. In accordance with Facebook’s rules, users must be 13 years of age or older to participate on this page. Posts made by those identifying themselves as younger than 13 will be deleted. Please note that posts containing personal attacks, profanity, or illegal material are prohibited. In addition, multiple postings of the same content may be construed as spam and will be deleted. We reserve the right, at our discretion, to remove any post that is deemed unintelligible or irrelevant, or to block a user's privilege to post to our page. The appearance of external links on this page does not constitute official endorsement on behalf of the Cystic Fibrosis Foundation. All content posted by the Cystic Fibrosis Foundation is the property of the Cystic Fibrosis Foundation and is subject to copyright laws. For more information, please visit http://www.cff.org/legal_terms_and_conditions/#Policy_on_Intellectual_Property. The Cystic Fibrosis Foundation is a 501(c)(3) tax-exempt organization and therefore prohibited from directly or indirectly participating in any political campaign. In accordance with the Internal Revenue Service regulations, any posts determined to be political activity will be removed.

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Our Story

About CFF: Faced with insurmountable odds, but determined to save the lives of their children, a group of concerned parents came together in 1955 to form the Cystic Fibrosis Foundation. At the time, very little was known about cystic fibrosis, but the tenacity and strength of CF families laid the groundwork for monumental progress in research, care, and treatment of a rare disease. Today, because of their hard work and the support of generous volunteers and donors, many people with CF are living into adulthood. Yet, we still lose precious young lives every day and will not be satisfied until there is a cure for all those living with this disease.


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Hi, My name is Heidi and I am the Outreach Coordinator for the Songs of Love Foundation. The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. Each song is professionally produced with lyrics containing the child's name and references to all of his or her favorite activities, things, people, and pets. Songs are written and performed in any language in the musical style that the child likes best (pop, R&B, rap, rock, alternative, etc.), by a variety of talented professionals. Request a song using the link below:
Hear from Drs. Jennifer Taylor-Cousar and Pamela Zeitlin about the latest advances in research and treatment of adult and pediatric cystic fibrosis, including a study led by researchers at @njhealth that demonstrates how a three-drug combination can improve lung function, reduce exacerbations and improve quality of life. This discovery is one that could ultimately help 90% of people with CF. Dialogue with a Doc, May 13 LIVE online @2 p.m. EDT. Register now.
hello! My sorority, Delta Phi Epsilon at the University of Pittsburgh raises money every year for the Cystic Fibrosis Foundation and last year we raised over 9,000 dollars! This year our goal is to break 10,000 dollars!! As a part of that goal we are currently a part of a competition to get the most likes/comments on this post of us on the pittfiji instagram page! We're calling on everyone we know, including all northeastern PA CFF Supporters to help us win! If you could please like/comment/tell your friends and give dphie/CFF a shout out in the comments that would be awesome!! We have the chance to win $350 for the Cystic Fibrosis Foundation!! Thanks!! https://www.instagram.com/p/BoZ0erDn_bT/?utm_source=ig_web_button_share_sheet
Hi. My 3 yr old grandson has CF. I have been told that the doctors don't expect his to worsen to a level of transplant but......... His current treatments seem to be a vest (we call it thumper), a nebulizer treament, enzymes for digestion, and a pill at bedtime. He gets thumper and his neb 2 times a day unless he gets a cold. I have him and his 2 brothers sat nights and am getting more comfortable with the routine. That vest is a godsend. I remember a girl in high school who had cf. She taught a few of us how to 'thump' her if she needed it during the day. The vest is so much nicer. One question I have is for those of you with the little guys. How long does it take before a child reaches a point where they don't cry and fuss during treatments? I try to do his treatment while his brothers are getting bathed and ready for bed so he doesn't feel left out watching them play. We try to put something on tv to entertain him since he gets vibrated too much to use his ipad. Also, any tricks to sterilizing the neb stuff? I already melted one and had to jury rig it for the morning treatment. Plastic bag around the seal with duct tape to hold it worked great! They have a gadget at home for that but with 3 kids, thumper (heavy), neb set and clothing, we don't move that for 1 night. I hope and pray the doctors are right about it not getting worse but I know that could change.
The Paddleboard journey from Bimini (Bahamas) back to the mainland in Florida is in less than 50 days. This journey is to bring awareness to the benefits of the Ocean for those living with Cystic Fibrosis. Travis Suit's daughter, Piper, was diagnosed with CF when she was four years old. On Sunday Taylor did a 20 mile paddle and has gone all the way up to 27 miles thus far. The journey is 50 miles total. He's almost hit his goal of $1,000. Click the link to read his latest update and donate to this amazing cause! (100% of funds raised goes to helping families with Cystic Fibrosis and research for a cure). Links below to the 2 foundations the money goes to: http://www.pipersangels.org/ - Piper's Angels Foundation https://www.cff.org/ -Cystic Fibrosis Foundation