Cystic Fibrosis Foundation - Northeastern Pennsylvania Chapter

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

Cystic Fibrosis Foundation - Northeastern Pennsylvania Chapter 1541 Alta Drive Suite 204 Whitehall, PA, 18052

Mission: The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

Operating as usual

Celebrating the holidays with friends and family is something that people with cystic fibrosis need to approach with cau...
11/02/2020
COVID-19 Community Questions and Answers

Celebrating the holidays with friends and family is something that people with cystic fibrosis need to approach with caution under the best of circumstances. The COVID-19 pandemic makes staying safe this holiday season more complicated. We've updated our COVID-19 community Q&A to include information about the factors that affect your risk as you consider how — and with whom — to celebrate the holidays.
To visit our updated Q&A's, visit here:https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/CF-and-Coronavirus/COVID-19-Community-Questions-and-Answers/

The Cystic Fibrosis Foundation has prepared FAQs to address key concerns we have heard from the CF community regarding the coronavirus (COVID-19) outbreak, including information from the CDC on the risk to people with underlying health conditions and steps you can take to protect yourself and your l...

The Halloween fun is now all done but there is one more task that needs to be done! Don't forget to turn your clocks bac...
11/01/2020

The Halloween fun is now all done but there is one more task that needs to be done! Don't forget to turn your clocks back before bed! You'll have one extra hour to rest your head!

10/31/2020

Ghosts and goblins, spooks galore. Scary witches at your door. Jack-o-lanterns smiling bright. Wishing you a haunting night! Happy Halloween!

We would LOVE to see your costumes! Post a picture below!

10/30/2020
65 Roses Spritz Ingredients

Surprise! Did you know the No Show Gala has its own specialty cocktail? What's a gala event without a tasty adult beverage in hand?!

Dan Magro, our official No Show Gala mixologist, has created a cocktail for this very special occasion, the 65 Roses Spritz! Make sure to watch his video for all the ingredients you will need to have on hand. Don't worry...it's SUPER SIMPLE, but SUPER DELICIOUS!

To find out more information on this event and to register, visit our event page here: https://finest.cff.org/centralpa?_ga=2.119481995.30088415.1603981001-1366400032.1602780795

This is an event you will NOT want to miss! We hope to "see" you there!

https://www.youtube.com/watch?v=iNUgOE1LOlk&feature=youtu.be

Dan Magro, our No Show Gala's official mixologist gives a sneak peek at the ingredients you need to have on hand to put together your 65 Roses Spritz during ...

10/28/2020
CF Foundation | Together: Now

The recording from Together: Now, our virtual event celebrating the cystic fibrosis community, is now available! Watch as special guests including NFL quarterback Joe Flacco, former Bachelorette Becca Kufrin, and adults living with CF share their stories as we celebrate the many ways the CF community tackled the 65 Roses Challenge together.

https://www.youtube.com/watch?reload=9&v=SU6K0Jx6YA8&t=3s

At Together: Now, members of the cystic fibrosis community and special guests, including Joe Flacco and Becca Kufrin, shared their inspiring stories as we ce...

Take advantage of our "Spooktacular" $125,000 local matching gift campaign with Wishes and Dreams for Cystic Fibrosis 50...
10/27/2020

Take advantage of our "Spooktacular" $125,000 local matching gift campaign with Wishes and Dreams for Cystic Fibrosis 501©3 by making a donation to our annual fund. It's no trick that tripling your impact is the sweetest Halloween treat! With your help, we can move our mission forward. Donate here: fightcf.cff.org/npa-anf

Have you registered for our "No Show Gala" yet? This virtual week-long event begins November 6th at 9AM through November...
10/23/2020

Have you registered for our "No Show Gala" yet? This virtual week-long event begins November 6th at 9AM through November 13th at 9PM. You will have the opportunity to bid on unique auction items and make Bid for a Cure donations throughout the entire week!

All registrants will be emailed a pre-recorded video of our gala program, showcasing our CF Fighters, community members and CF Foundation updates and highlights that will be sure to inspire all viewers. This allows you to watch our program anytime, anywhere, on your own schedule! Attendees will also receive a keepsake Digital Virtual Program Book.

While we may not be able to be together in person, we hope you will continue to advance our mission to cure cystic fibrosis by supporting this incredible event! It will be a moment you will not want to miss!

Register today at: https://auction.cff.org/?idEvent=2800&flsr=1&_ga=2.206216283.933393543.1602780795-1366400032.1602780795

Due to some recent challenges we have been experiencing with USPS, the Central & Northeastern PA Chapters' mailing addre...
10/22/2020

Due to some recent challenges we have been experiencing with USPS, the Central & Northeastern PA Chapters' mailing address has TEMPORARILY changed. We made this decision to ensure our donors felt safe and secure when supporting the Cystic Fibrosis Foundation. Please make note of the change below:

Cystic Fibrosis Foundation
PO Box 6686
Harrisburg, PA 17112

If you have any questions or concerns, please feel free to reach out to our office at 717-671-4000 or email us at [email protected].

Jamie Roney, a mother of a child with CF, talks about how she wants to prepare her daughter for the world when she grows...
10/21/2020
Raising an Adult (in Training)

Jamie Roney, a mother of a child with CF, talks about how she wants to prepare her daughter for the world when she grows up, and that includes taking charge of her CF. She is only 4 years old, but it's never too early to get her ready to take on her CF care by herself. "We are not raising children - we are raising adults."

Read her story here: https://www.cff.org/CF-Community-Blog/Posts/2020/Raising-an-Adult-in-Training/

I want my daughter to be prepared for the world when she grows up, and that includes taking charge of her CF. She is only 4 years old, but it’s never too early to get her ready to take on her CF care by herself.

Calling all Finest Alumni and Young Professionals! Join us on  your lunchbreak this Thursday 10/22 for our virtual Speed...
10/20/2020

Calling all Finest Alumni and Young Professionals! Join us on your lunchbreak this Thursday 10/22 for our virtual Speed Networking Event co-hosted by the Northeastern and Central PA Chapters! Each registrant will have 2-3 minutes to share a little bit about themselves and what they do (get that elevator speech ready) and connect with professionals across Pennsylvania to grow your network! To RSVP and receive the event link, please email Jillian at [email protected].

Happy Monday! Quick reminder that Grampions Happy Hour is Tonight, October 19th at 7pm.To RSVP and receive the event lin...
10/19/2020

Happy Monday! Quick reminder that Grampions Happy Hour is Tonight, October 19th at 7pm.To RSVP and receive the event link, please email Jillian at [email protected]. We hope to see you there!

Did you know you have the chance to TRIPLE your impact to the Cystic Fibrosis Foundation? Add "donate to the Northeaster...
10/18/2020

Did you know you have the chance to TRIPLE your impact to the Cystic Fibrosis Foundation? Add "donate to the Northeastern PA Annual Fund" to your fall to-do list!

Wishes and Dreams for Cystic Fibrosis 501(c) will match all individual gifts TWO TO ONE from $1 to $9,999 received between September 1st and December 31st, 2020 up to $125,000. This means your gift of $50 would multiply to $150!

We hope you will consider making the most of this exciting opportunity by giving to the Northeastern Pennsylvania Chapter's Annual Fund today!

Donate here: https://fightcf.cff.org/site/Donation2?df_id=1620&1620.donation=form1&s_chapter=1069

A huge THANK YOU to our 2020 No ShowGala Sponsors!Platinum Supporter - UPMC and UPMC Health PlanRose Supporter - Highmar...
10/16/2020

A huge THANK YOU to our 2020 No Show
Gala Sponsors!

Platinum Supporter - UPMC and UPMC Health Plan
Rose Supporter - Highmark and Penn State Health
Silver Supporter - United Concordia Dental and Reager & Adler, PC

Thank you so much for your support of the Cystic
Fibrosis Foundation!

Last chance to purchase tickets! Join us tomorrow night at 9:30 p.m. ET for our virtual Get Salty Comedy Show (live from...
10/15/2020

Last chance to purchase tickets! Join us tomorrow night at 9:30 p.m. ET for our virtual Get Salty Comedy Show (live from LA) for a night of laughs from the comfort of your own home! Tickets are available for purchase until 11:59 pm tonight so don't delay! Link to purchase: https://finest.cff.org/getsaltynortheasternpachapter

Without our passionate volunteers, and the support of our generous sponsors, AbbVie, Vertex, Genentech, and Gilead, Grea...
10/14/2020

Without our passionate volunteers, and the support of our generous sponsors, AbbVie, Vertex, Genentech, and Gilead, Great Strides would not be possible. Thank you for all that you do for the cystic fibrosis community. We 💜 you!

Calling all Grandparents! Save the date for our next Grampions Happy Hour on Monday, October 19th at 7 p.m.. To RSVP and...
10/13/2020

Calling all Grandparents! Save the date for our next Grampions Happy Hour on Monday, October 19th at 7 p.m.. To RSVP and receive the event link, please email Jillian at [email protected] or comment below and we will be in touch!

Need Friday night plans? Join us THIS Friday 10/16 at 9:30 p.m. ET  for our virtual Get Salty Comedy Show (live from LA)...
10/12/2020

Need Friday night plans? Join us THIS Friday 10/16 at 9:30 p.m. ET for our virtual Get Salty Comedy Show (live from LA) for a night of laughs from the comfort of your own home! Tickets are available for purchase through Thursday so don't delay! Link to purchase: https://finest.cff.org/getsaltynortheasternpachapter

Have you heard about our new app?! Streamline your fundraising experience by downloading our new fundraising app, Fight ...
10/11/2020

Have you heard about our new app?! Streamline your fundraising experience by downloading our new fundraising app, Fight CF. We've combined all our fundraising apps into one convenient tool. Whether you’re participating in Great Strides, CF Climb, Cycle for Life, Xtreme Hike, or Team CF, use the app to connect with your donors, post on social media, deposit checks, and more! Available in App Store or Google Play. Download today!

Compass Can Help During Open Enrollment! If you’re considering making changes to your health insurance coverage or enrol...
10/10/2020

Compass Can Help During Open Enrollment! If you’re considering making changes to your health insurance coverage or enrolling in a new plan, our expert team of Compass case managers is here to help you compare plan options that best meets 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/How-Compass-Helps-People-With-CF-and-Their-Families/Understanding-Insurance/Your-Insurance-Plan/Health-Insurance-Coverage-and-Open-Enrollment-Periods/

Happy Friday! Looking for weekend plans? Then join us NEXT Friday 10/16 at 9:30 p.m. ET for a night of laughs with Sarah...
10/09/2020

Happy Friday! Looking for weekend plans? Then join us NEXT Friday 10/16 at 9:30 p.m. ET for a night of laughs with Sarah Silverman (Emmy Award Winner), Reggie Watts (House Band Leader on James Corden), Beth Stelling (HBO MAX), Joel Kim Booster (Conan),and Tone Bell (Comedy Central, Film and TV)! Live from Los Angeles, you can join the virtual Get Salty Comedy Show from the comfort of your own home! Only 6 more days to purchase tickets! Link to purchase: https://finest.cff.org/getsaltynortheasternpachapter

Congratulations to our amazing 65 Roses Challenge Participants! The Challengers listed below have raised at least $650 a...
10/07/2020

Congratulations to our amazing 65 Roses Challenge Participants! The Challengers listed below have raised at least $650 and the Champions have raised at least $1,000! We cannot thank you enough for your hard work and dedication to making CF one day stand for cure found!

Today is the day! Join us this evening at 7pm for "Together: NOW, a Virtual 65 Roses Challenge Celebration!" You must be...
10/06/2020

Today is the day! Join us this evening at 7pm for "Together: NOW, a Virtual 65 Roses Challenge Celebration!" You must be registered to attend, so don't delay and click on the link below to register. This is one celebration you won't want to miss!
Link to register: https://community.cff.org/vlc/live/44/page/259

Got the Monday Blues? Then join us next Friday, October 16 at 9:30 p.m. ET  for a night of laughs with Sarah Silverman (...
10/05/2020

Got the Monday Blues? Then join us next Friday, October 16 at 9:30 p.m. ET for a night of laughs with Sarah Silverman (Emmy Award Winner), Reggie Watts (House Band Leader on James Corden), Beth Stelling (HBO MAX), Joel Kim Booster (Conan)! Live from Los Angeles, you can join the virtual Get Salty Comedy Show from the comfort of your own home! Tickets are on sale now and can be purchased at: https://finest.cff.org/getsaltynortheasternpachapter

10/04/2020
2020 T-Shirt Recongition

Happy Sunday! Today we would like to reconize and thank our Great Strides teams that qualified for recognition on the back of this year's Walk t-shirt. While we couldn't be in person this year, we hope you enjoy your name in "print" on Social Media!

We are excited to join CF Foundation Grampion Chair, Bonnee Binker, in announcing that The Delaney Binker Family Cure Cy...
10/03/2020

We are excited to join CF Foundation Grampion Chair, Bonnee Binker, in announcing that The Delaney Binker Family Cure Cystic Fibrosis Miami Foundation will match every new Legacy Society Donor with a $500 contribution to the CF Foundation up to $50,000! This nationwide match runs between August 1 and December 28, 2020, or when the match is completed, whichever comes first, and donors who join after the match is complete will support the mission of the CF Foundation.

Contact us to join today and create your legacy!

URL: https://mylegacywithcff.org/

Pumpkin Spice and everything nice! Crisp cooler air, falling leaves, Halloween and all the fun things in between! HELLO,...
10/01/2020

Pumpkin Spice and everything nice! Crisp cooler air, falling leaves, Halloween and all the fun things in between! HELLO, OCTOBER!

Join us on Friday, October 16 at 9:30 p.m. ET for this year’s National Tomorrow’s Leaders signature event! Live from Los...
09/30/2020

Join us on Friday, October 16 at 9:30 p.m. ET for this year’s National Tomorrow’s Leaders signature event! Live from Los Angeles, you can join the virtual Get Salty Comedy Show from the comfort of your own home! The secret celebrity line-up is one you won’t want to miss. VIP tickets are on sale for $100 and will get you face-to-face with your favorite comics, so that you can laugh with them in real time. General admission tickets are available for $35. Link to purchase here: https://finest.cff.org/getsaltynortheasternpachapter

Have you registered for our national virtual event on October 6th? "Together: NOW, a Virtual 65 Roses Challenge Celebrat...
09/29/2020

Have you registered for our national virtual event on October 6th? "Together: NOW, a Virtual 65 Roses Challenge Celebration" spotlights members of the CF community and legendary athletes, who will share their inspiring stories and we will celebrate the many ways people with CF and their loved ones have tackled the 65 Roses Challenge to help us advance our mission! You must be registered to attend.

Link to register: https://community.cff.org/vlc/live/44/page/259

The Foundation has extended its offering of FREE memberships to "Beam" for adults with CF ages 18+ through the end of 20...
09/28/2020

The Foundation has extended its offering of FREE memberships to "Beam" for adults with CF ages 18+ through the end of 2020. Beam provides on-demand sessions and live classes with specialist fitness instructors who can adjust exercises specifically for people with CF.

Those interested can sign up at www.beamfeelgood.com (no access code is needed).

09/27/2020
Cystic Fibrosis Foundation

How will you #ROSEUPCF? Sign up here: http://on.cff.org/roseup

Join us and ROSE UP! ROSE UP is a new virtual fundraising event created and led by adults with cystic fibrosis to bring the CF community together to ROSE UP and support our mission. Anyone who wants to ROSE UP for a cure is welcome!

What does it mean to ROSE UP? 🌹
🔹 JOIN – once you register you are in!
🔹 ENCOURAGE others to ROSE UP
🔹 SHARE why you ROSE UP on social media using #ROSEUPCF
🔹 DONATE any amount big or small
🔹 ROSE UP on October 2!

How will you ROSE UP? Sign up to help reach our goal of 650 registrants from all 50 states participating in a day of fundraising and story sharing on October 2. Register to join the movement: http://on.cff.org/roseup

Today is National Family Day! Today puts the spotlight on the people that make our lives meaningful. Families come in ma...
09/26/2020

Today is National Family Day! Today puts the spotlight on the people that make our lives meaningful. Families come in many forms and sizes but what they all share is unconditional love and support. Take some time today to appreciate the special ones in your life — give them a call or send them a note to let them know you’re thinking of them!

*This photo features Maddie Hagler, a 16 year old with CF and her family. Featured (left to right) mother Jennifer Hallman, Maddie Hagler, step-mother Sarah Beth Hagler, sister Molly Hagler, father Clay Hagler, step-brother Miller Hagler, and step-sister Sadie Hagler*

Join us on October 16 at 9:30 p.m. ET for this year’s National Tomorrow’s Leaders signature event! Live from Los Angeles...
09/25/2020

Join us on October 16 at 9:30 p.m. ET for this year’s National Tomorrow’s Leaders signature event! Live from Los Angeles, you can join the virtual Get Salty Comedy Show from the comfort of your own home! The secret celebrity line-up is one you won’t want to miss. VIP tickets are on sale for $100 and will get you face-to-face with your favorite comics, so that you can laugh with them in real time. General admission tickets are available for $35. Link to purchase here: https://finest.cff.org/getsaltynortheasternpachapter

We invite all CF parents to join us this evening for our CF Parent Virtual Chat at 6:30 pm. This event is an open forum ...
09/24/2020

We invite all CF parents to join us this evening for our CF Parent Virtual Chat at 6:30 pm. This event is an open forum for you to connect with other CF parents in our chapter, share advice, and provide support to one another. To RSVP and receive the event link, please email Jillian at [email protected].

The Central & Northeastern PA chapters are excited to be coming together to bring you our “No Show Gala,” a virtual week...
09/23/2020

The Central & Northeastern PA chapters are excited to be coming together to bring you our “No Show Gala,” a virtual week-long event beginning Friday, November 6th through November 13th! Attendees will have the opportunity to bid on auction items and make 100% tax deductible Bid for a Cure donations throughout the entire week! The best part is, you can watch the program anywhere, anytime...whenever it works best for your schedule!

We may not be able to be together in person, but we hope you will continue to advance our mission to cure cystic fibrosis by supporting this incredible event! Feel free to invite others to this fun-filled event! It will be a moment you will not want to miss! More information to come closer to the event!

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.


Comments

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