Congratulations to Our Scholarship Winners!

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship for the Spring of 2019.

In our evaluation, we look for students who demonstrate tremendous academic achievement, community involvement and a powerful understanding of how having CF matched with these achievements places them in a unique situation to gain leadership roles within the community. Our scholarship is open to all pursuing any degree, from associates to Ph.Ds. We believe that any higher education is a strong foundation for advocacy and involvement in CF.

We are pleased to announce Rebecca Cedillo and Michael Miccioli as the recipients of this semesters’ scholarship. Congratulations to them! They will be awarded $2500 each.

Both of our recipients demonstrated the leadership, intelligence, and drive of Lauren Melissa Kelly. We at USACFA look forward to seeing them further develop their leadership and advocacy in the cystic fibrosis community.

We are excited to announce more scholarship opportunities coming soon! Please stay tuned for more information. For questions, please contact us at scholarships@usacfa.org.

CFReSHC meeting on Aging, Menopause and CF

What is menopause? I’m 30 years old and have heard it groused about for years, but I really don’t know what it is. I have heard from older women with CF that maybe it starts earlier in CF women and that the experience could be different from the non-CF population. I know it has something to do with hormonal changes, more estrogen, maybe? But I have no idea how it will impact my health in the future or what signs and symptoms I should be on the lookout for. On this one, I will follow the girl scouts’ mantra “always be prepared.”

Luckily, CFReSHC is hosting their next Patient Task Force meeting about the menopause experience. It is a great opportunity for any adult woman with CF to learn about what to expect in a few years’ time or to share your wisdom and questions if you’re experiencing or have experienced it.

The meeting will be December 10th from 2-4pm EST.  Laura Mentch, Health Educator, will be sharing her knowledge on the subject.

Please email info@CFReSHC.org, or follow us on facebook for more information.

Recapping the last month of podcasts!

CF Podcast 198: The Art of Healing

In the latest Cystic Fibrosis Podcast, Jerry met with Dylan Mortimer – a 38-year-old artist who lives in New York City with his wife and two sons. As a CF patient, Dylan uses his art to represent his journey with the disease – and to inspire others in their battles to never settle for their diagnoses and keep hope alive past the difficulties they face.
The video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.

CF Podcast 199: Living Life after a Double Lung and Liver Transplant

Jerry Cahill chatted with Kathryn Norris about her journey with cystic fibrosis in his latest podcast. Diagnosed at 3 months, Kathryn soon moved back to her mother’s home-country, Spain, where she had a different experience growing up with CF. Because of socialized healthcare, she had a great deal of access to specific medications, but no access to more recently discovered treatments. In her hometown, walking to and from school helped her fit exercise into her daily life, as well as a number of extracurriculars including tennis, swim, roller blading, and more.
Tune in to learn more about Kathryn – her path with CF to a double lung transplant and a liver transplant, why she is studying to be a personal trainer, and how she copes with her disease.
This podcast was made possible through an unrestricted education grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 200: Being a CF Mom

Today’s CF podcast features Megan Neville – a CF mother and caregiver. She shares her story – from learning of her son’s diagnosis to dealing with the guilt of that news to how she now deals with a teenager who has a chronic illness. She reflects on the importance of having an incredible support system of family and friends surrounding her and how raising a CF child can be a team effort.
Tune in to learn more about Megan and her journey as a CF mom.
This video podcast was made possible through an unrestricted educational grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 201: Being a Lung Transplant Coordinator

Today’s Cystic Fibrosis Podcast features Nilani Ravichandran, current AVP for Cardiothoracic and Vascular Services at Beth Israel Medical Center, who spent over 17 years as a lung transplant coordinator at NY Presbyterian/Columbia University Medical Center. She sat down with Jerry Cahill to explain what transplant coordinators do, how they work to minimize infection and rejection, and how they teach their patients to care for their new organs. Nilani says that a transplant coordinator’s goal is to give his or her patients the best quality of life possible when they reach the end stages of their diseases.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

CF Podcast 202: Being Grateful

With the holiday season approaching, everyone starts to think about why they are grateful. In this video, a number of post-double lung transplant recipients share their reasons for being grateful, how they honor their donors, and more.
Don’t forget – registering to be an organ donor can save a life! Register today: donatelife.org.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

Third Annual CF Roundtable Gratitude Dinner

On October 17th, during the NACFC conference in Denver, CO, CF Roundtable (USACFA) hosted a dinner event honoring 68 social workers and other CF Care team members.

It was hosted by our very own Beth Sufian, JD and an informative presentation was given by Isabel Stenzel Byrnes.

The evening ended with a Gratitude Ceremony recognizing the importance of the CF team members to the health and well being of people with CF. Many attendees said the evening was the highlight of their attendance at NACFC.

Halloween themed goodie bags were handed out to each attendee, which contained a tote bag, with a lung design created by our talented director, Ella Balasa.

A big thanks to everyone who attended!

We have a limited number of totes remaining. This #givingtuesday be one of our first donors and you can recieve one of our very limited edition totes when you donate $100 or more to CF Roundtable! First come, first served basis!

 

Now accepting Sacks for CF Scholarship Applications! 🎓🎓

The Sacks for CF Scholarship is related to quarterback sacks made during the NFL season. The undergraduate and graduate award is made annually to 30 people who strive for therapy adherence and academic success.
For every sack recorded during NFL Monday Night Football games, a BEF corporate partner makes a donation to the Sacks for CF Scholarship Program. Sacks for CF funds are awarded annually to 30 college students, based on their academic achievements and adherence to daily CF therapy.
The top ten scholarship winners will be announced on Westwood One Sports Radio during Super Bowl Sunday, February 3, 2019.
Deadline: January 11, 2019
Amount: $3,000 to $10,000

Please support us through AmazonSmile

This is the season of giving! The holidays are approaching and we know our supporters are busy shopping for gifts, decorations, and more for family and friends.

Did you know that your purchases can make a difference?

When you purchase on Amazon Smile, specifically smile.amazon.com/ch/93-1036770, they donate to United States Adult Cystic Fibrosis Association (CF Roundtable) when you do your holiday shopping!

AmazonSmile is a website operated by Amazon that lets you enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when you shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the purchase price to the eligible charitable organization of your choice.

Please support us through this simple and automatic way every time you shop, at no cost to you. United States Adult Cystic Fibrosis Association (CF Roundtable) sincerely thanks you!

Happy Holidays!

USACFA NAMED “2018 TOP-RATED NONPROFIT” by GreatNonprofits

The 2018 GreatNonprofits Top-Rated Award Winners list is published!

Award based on Outstanding Online Reviews

USACFA, publishers of CF Roundtable, has been named a “2018 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits.

The Top-Rated Nonprofit Award is based on the rating and number of reviews that USACFA received from volunteers, donors and aid recipients.

Making the GreatNonprofits Top-Rated List helps USACFA get visibility, trust, and recognition. It is promoted to donors on the GreatNonprofits website.

As donors look for nonprofits to give to in this season of giving, you can also share the good news about USACFA, publishers of CF Roundtable being a 2018 Top-Rated Nonprofit!

To see USACFA, publishers of CF Roundtable’s new Top-Rated Nonprofit badge Click here.

We thank you all!

Have you talked to your CF Team about your sexual and reproductive health?

By: Georgia Brown

I often say that there is no modesty in medicine.  I mean, we routinely talk with medical professionals who are used to gross anatomy.  But I realized I was wrong when I broached sexual and reproductive health (SRH) issues with my CF physician.

After I attended the CFF MiniCon on SRH, I was so energized by the honest discussions that I had handwritten notes to share at clinic the next day.  After giving an overview of the event, I listed items clinics should be talking about and offered my notes for use as a reference. Continue reading Have you talked to your CF Team about your sexual and reproductive health?

AbbVie Awards $25K to Two Students with Cystic Fibrosis

Two students living with cystic fibrosis (CF) were selected as AbbVie’s 2018 Thriving Undergraduate and Thriving Graduate Students as a part of the AbbVie CF Scholarship program. Vinnie Acedo-Holmquist and Jackie Johnson were each the recipient of a $25,000 scholarship in their pursuit of higher education.

                    

Vinnie, the 2018 Thriving Undergraduate Student, is currently attending Chandler Gilbert Community College and pursuing a degree in Business Administration. Jackie, the Thriving Graduate Student, is currently studying Physician Assistant Studies at Saint Catherine University. Both have demonstrated strength and resilience in facing CF head-on, and serve as inspirations for other students pursing their dreams of higher education.

Earlier this year, 40 undergraduate and graduate CF students were selected as 2018 AbbVie CF Scholars and received $3,000 scholarships. The students then had the opportunity to earn the title of Thriving Undergraduate or Graduate Student along with an additional $22,000 in scholarship funding by participating in a public voting period. Vinnie and Jackie were named Thriving Students based on a combination of their academic achievements, community involvement/extracurricular activities, essay and creative presentation scores, as well as the number of public votes cast.

To learn more about these students and the scholarship program, visit the AbbVie Scholarship website,www.AbbVieCFScholarship.com.

If you have any questions or would like to schedule an interview with either student to learn more about their experiences and goals, feel free to contact me at (212) 583-2701 or burseyp@ruderfinn.com for additional information. 

About the AbbVie CF Scholarship

The AbbVie CF Scholarship was established 26 years ago in recognition of the financial burdens many families touched by CF face and to acknowledge the achievements of students with CF. Since its inception, the scholarship program has awarded over $3.2 million in scholarships to over 1,000 students. The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. As of 2016, more than half of the CF population are 18 years or older.

  1. 1. Cystic Fibrosis Foundation. About Cystic Fibrosis. Diagnosed with Cystic Fibrosis. Available at: https://www.cff.org/What-is-CF/Diagnosed-with-Cystic-Fibrosis/. Accessed September 2018.

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Invitation to Participate

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) is a patient engagement project that provides women with CF the opportunity to be equal partners with healthcare professionals to shape the future of CF research.  CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF.  CFReSHC holds monthly virtual meetings on topics that impact the lives of women with CF like contraception, family building, hormone influences on CF, incontinence and menopause.  As we enter our third year, CFReSHC is looking for women with CF who are passionate about sexual and reproductive health research to join our collaborative who can commit 4-6 hours a month and we provide  a small honorarium for your time commitment.

CFReSCH is looking for a:

  Social Media Strategist who has connections in the CF community or who is willing to engage with the CF community on our behalf.  CFReSHC currently has a social media presence on Facebook, Twitter and Instagram and the applicant would need to be able to post 2-3 times per week as well as check the platforms regularly and make responses as needed.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Grant writer and Coordinator who has connections in the CF community or is willing to connect with the CF community and engage it to seek out funding opportunities for potential grants.  The applicant would need to maintain a database of potential grant opportunities.  An applicant who has experience writing applications is preferred.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Women with CF are welcome to send a letter of interest to: cfreprohealth@gmail.com.  Together, we will respond to the health needs of the CF community by providing data for healthcare professionals to pave the way for improved sexual and reproductive health resources, healthcare, and knowledge.