News Archives

July 2017

KALYDECO APPROVED FOR 23 MUTATIONS!!

The FDA approved ivacaftor (Kalydeco®) for individuals ages 2 and older who have at least one of 23 residual function mutations in the CFTR gene. As a result, an additional 900 people with cystic fibrosis can now benefit from modulator therapies.
The approval of these 23 mutations was based on a combination of laboratory results that suggest the benefit of ivacaftor for these mutations, clinical trial data, and the drug's established safety record.
You can read more about this in the web story on cff.org, or in the press release issued by the FDA.

IMPORTANT UPDATE ON HEALTHCARE REFORM PROPOSALS

As many of you may know, House Republicans released the first drafts of their plans to repeal and replace the Affordable Care Act this week. The CF Foundation's analysis reveals the bills from the Energy & Commerce and Ways & Means Committees will significantly reduce coverage and consumer protections for people with CF.

The Cystic Fibrosis Foundation has been engaged with House members and staff throughout this process making the needs of the community known. Earlier this week, we signed on with ten other high-profile patient organizations, signaling our core principles that health insurance should be affordable, accessible, and adequate. These principles align with ose set forth by the CF Foundation and form the lens through which we will evaluate all related legislation.

The CF community voice is stronger than ever. Just last week we held nearly 300 meetings with Congressional offices to discuss health care issues. We continue to need your voice. Next week the community at large will be asked to participate in a broad advocacy campaign to email and call their representatives in Congress. We hope you will join us to carry this message forward to your elected officials.

Please continue to stay up-to-date using the new section on cff.org about health reform

BIG NEWS FROM THE CF FOUNDATION

The CF Foundation and the Therapeutics Development Network sent out a press release on Wednesday, March 29 reporting the initial results of the most recent Phase 3 trial with Vx 661. This is another big step in treating the basic defect in CF. Click here to read more!

January 2017

Welcome to Chinwe Izegbu, MSN, RN, APN-C

Chinwe Izegbu joined our CF Center on January 9, 2017. She is a welcome addition to the pediatric and adult CF teams and now our second NP! Chinwe got her MSN from UMDNJ and is currently pursuing her DNP from Rutgers University. She started her career in inpatient telemetry and critical care. She then moved on to UMDNJ in Newark as an ER nurse. While working at UMDNJ, she got her MSN and APN. Most recently, she was a family medicine hospitalist with Robert Wood Johnson Medical Group at RWJUH. She comes to us with experience in chronic disease that lends itself well to Cystic Fibrosis care. She has already met many of you and looks forward to building a relationship with all of our patients and families. We are thrilled to have her on the team!

CF MiniCon: Transplant
Sunday, May 21, 2017

Co-Chairs: Valerie Batz and Lauren Guidry
Team: Jerry Cahill, David Guthrie, Lynne Korlewitz, Heather McCoy, Auburn Volz, and Piper Beatty Welsh

This was the first virtual event for adults with CF to participate from computer or mobile device, to participate in a keynote panel, group chats, and small video breakouts on transplant issues that are unique to people living with CF. This event is designed by and for adults with CF, and provides a space for open and honest dialogue.

Family Education Day- April 17,2016

This year's Family Day was well attended! We were excited to have Karen Von Berg as our guest speaker. She gave a great talk on the value of physical therapy in CF. To learn more, click here.

Our social worker also gave a talk on Emotional Health and CF and presented information on the new CF Foundation Guidelines. For more information on this presenation,click here.

Other News

The Cystic Fibrosis Center has been bustling with activity over the last two years and we would like to share some of it with you! We have applied for and received several grants to develop new programs or improve services.

TDN Designation 2015 :Our center was approved as a site in the Therapeutics Development Network, part of the CF Foundation. This designation has provided us with access to current and future clinical trials as well as support for research coordinators to conduct these studies. As a result, we have enrolled in several studies over the last two years. Additional award money last year provided additional support for more nursing staff to help with research. This is very exciting for us and for you and we hope you will participate! For moreinformation on clinical trials in CF, click here. To find a trial near you, CLICK HERE
MHC GRANT: Our center received a grant beginning in January 2016 for a mental health coordinator to assist with coordination of services for patients and families. As a result, our social worker, Erin McElroy Barker, is now full time and we are hiring a psychologist to work with patients and families in clinic. We are excited about this new initiative from the CF Foundation. Please call Erin at 732-235-6409 with any questions.
PHARMACY ASSISTANCE: We are excited to announce the latest addition to our center. Very soon we will be adding a pharmacist to our team to help us and you with medications. Thanks to a grant from the CF Foundation, the pharmacist will be available during clinic hours to review medications, provide education, advise physicians on the best medications for you, etc.

Archived on 6/30/2016

Big news from the CF Foundation... The FDA approved the new corrector drug combination, ORKAMBI, on July 2, 2015! For more information from the CF Foundation, click here .

If you would like more information about Orkambi, who is eligible and next steps, please visit h ttp://pi.vrtx.com/files/patientpackageinsert_lumacaftor_ivacaftor.pdf
The NJ Chapter of the CF Foundation just posted new information in their newsletter. For a copy, click here
Our Center welcomes Dr. Kavita Patel, MD to the pediatric pulmonary team. Dr. Patel comes from St. Christophers in Philadelphia and has a lot of experience in Cystic Fibrosis. We look forward to you meeting Dr. Patel in clinic and in the hospital.
The Pediatric Center also welcomes two new respiratory therapists to the outpatient team. Both Mary O'Brien, RRT and Lori Karin, RRT have many years experience taking care of CF patients in the hospital and we are grateful to have their experience and energy on the outpatient team.
As of January 2015, the Rutgers RWJMS CF Center is now also a designated TDN center (Therapeutics Development Network). Ask how you can be a part of the research!