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!

Antibiotic plus probiotic combination may kill off superbugs

By 

Every year, over 2 million people in the United States develop infections that are resistant to treatment, and approximately 23,000 people die as a result.

These statistics have prompted the Centers for Disease Control and Prevention (CDC) to deem drug resistance “one of the biggest public health challenges of our time.”

Therefore, researchers are hard at work trying to develop ingenious ways of tackling so-called superbugs — bacteria that have become immune to antibiotic treatment.

Lately, researchers have added probiotics to their arsenal against superbugs. Probiotics are beneficial bacteria found in foods, such as yogurt, kefir, pickles, or miso soup.

Only a month ago, for example, a study suggested that simply consuming probiotics on a regular basis could reduce the need for antibiotics, thus helping to curb the drug resistance crisis. Continue reading Antibiotic plus probiotic combination may kill off superbugs

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!

Vote Like Your Life Depends On It! It Does.

By Beth Sufian, JD

Vote like your life depends on it Tuesday because if you have cystic fibrosis it does!

I did not think I needed to write an article about how important voting on November 6th is to people with CF, but last week I realized I was wrong.  I had discussions with some people with CF who did not understand the importance of the election to the CF community. I started to explain that if there are no changes in who is serving in Congress, the Affordable Care Act will be repealed in 2019.

We saw how close Congress came to repealing the Affordable Care Act (“ACA”) last year. Senator John McCain was our hero when he voted against the repeal of the ACA. Senator McCain lost his own battle with cancer this year and he will not be able to save us again. To be safe we need 3-4 new Senators and 23-26 new members of the House who will protect the ACA.

Everyone with CF and everyone who loves a person with CF should be spending the next two days getting out the vote for candidates who will protect our ability to access the care and the medication we need to fight CF.

If the Affordable Care Act is repealed it will become impossible for large numbers of people with CF to access the health insurance policies or government programs we need to pay for our care and the expensive medications that are improving the lives of children and adults with CF.  Last week we heard from the Republican majority leader Senator Mitch McConnell who said that in 2019 he pledged to repeal the Affordable Care Act, to both reduce the number of people who are eligible, and to restrict coverage under Medicaid and Medicare.

Many in the CF community mistakenly believe that the ACA does not apply to them because they have a private health insurance policy. The protections of the ACA apply to all private insurance policies. Here are just some protections the ACA provides to people with CF.

  1. The right to keep a parent’s health insurance coverage until a young adult turns 26.
  2. No lifetime caps on coverage.
  3. A maximum out of pocket amount.
  4. No pre-existing condition exclusions.
  5. 45 services that must be covered.
  6. The option for a state to expand Medicaid to low-income adults.

Without the ACA all of these provisions and many more protections go away.

Recent data show that at any given time at least 50 percent of children and adults with CF are enrolled in Medicaid.  Even if you have private health insurance, the loss of Medicaid by people with CF will still affect you. If 50 percent of our population does not have coverage for medication or treatment it will be impossible for companies and health care providers to deliver medications and treatment to the rest of us.  There will not be enough people who will be able to pay for care and medication. All people with CF will be negatively affected if the ACA is repealed.

If you have made other plans on November 6th I urge you to reschedule. There is no other event that should take precedence over the fate of health care for those with CF. We should all be coming together to make sure when we wake up on November 7th we know we did everything we could to protect the rights of people CF.

We ALL need to be getting out the vote on Tuesday. What does that mean? We need to be reaching out to friends and family members and explain why this election is so important to the CF community.

We need to reach out to campaigns who need our help block walking, phone banking and texting to get voters to the polls. We need to make sure everyone we know has a way to get to the polls. Many important races will be won by only a few votes. Every hour you spend getting out the vote now counts, there is no going back after the election is over.

This is the most important election of our lifetime.

Please join me in assuring that we have done everything we can for everyone in the CF community to continue to have the legal right to access insurance coverage. So many worked so hard to develop the excellent CF Care Center system. So many have spent their lives researching and discovering medications to help ease the burden CF places on us. Let us honor the memories of those who have lost their battle with CF by making sure we explain to friends and relatives why their vote on Tuesday is so important.

On Tuesday, I will be available all day to answer questions about the Affordable Care Act, Medicaid or Medicare coverage or to connect people to the information they may need to vote. Please call me at 1-800-622-0385 if I can help. I am acting as a private citizen on Tuesday and not as a member of any organization. I hope my next post will be of me dancing in the street late Tuesday night celebrating all of our efforts to make sure that everyone with CF has a bright future.

For Cystic Fibrosis Lung Infections, How Well Antibiotics Work May be Affected by pH, Oxygen

By Heather Buschman, PhD

People living with cystic fibrosis (CF) spend their entire lives battling chronic lung infections that are notoriously resistant to antibiotic therapy. Yet a one-size-fits all approach to wiping out the offending bacterium may not be the best approach for all patients with the disease, according to a new study by researchers at University of California San Diego School of Medicine and Skaggs School of Pharmacy and Pharmaceutical Sciences. Continue reading For Cystic Fibrosis Lung Infections, How Well Antibiotics Work May be Affected by pH, Oxygen

Giving Tuesday 2018

Hello CF Roundtable Subscriber,

With the holidays upon us, please consider donating to CF Roundtable on Giving Tuesday, November 27th, a national day of giving.

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information, and resources through CF Roundtable.

Because of you:

  • All of our readers receive CF Roundtable free and have access to the latest research, legal and critical knowledge that has maximized their medical care.
  • CF Roundtable can support scholarships for students with CF striving for higher education.
  • Our Speakers Bureau presenters (who are all adults with CF) can speak at your next CF event and spread education and support about CF to other adults with CF, health care personnel, family and/or friends.
  • We can continue all of this and more!

CF Roundtable is run by an amazing board of directors who are all adults with CF. Our time is 100% voluntary. Together, we create the CF Roundtable publication, website and numerous programs for you and our vital CF community.

We hope to count on your support this year. Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com and donate!

Contact us at cfroundtable@usacfa.org anytime.

Thank you for being a subscriber and Happy Holidays!

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?

An Ode to Friends with CF – Guest Blog by Amy Sylvis

By: Amy Sylvis

Yesterday, I didn’t want to go to the gym to workout. This time of year, I have bad allergies, the aspergillus in my lungs tends to cause me issues, my sinuses get angry and I just generally don’t feel like working out while my airways feel so tight.

Working out can sometimes remind me of the lung damage I have. One day I am able to run 5 minutes straight (ya, that’s a good day for me!), and some days running for 2 minutes straight is a huge struggle. That can make me feel like I’m falling short in my CF care – like I’m at fault for not being able to exercise as well as I could a few days earlier. But I’m insanely compliant and have been my whole life, so I know the truth is that some days with CF my lungs just aren’t as open as other days. Nature of the beast.

I’m also just not generally a very athletic person. I know that working out- forcing air deep in to my lungs and in to my small airways –  keeps me healthier than anything else available to me on this planet. Studies back this up as well – exercise inhibits epithelial sodium channels (eNac), which leads to hydration of airways and makes it easier to cough up mucus.

Sometimes this knowledge isn’t enough to get me to the gym, though.

Yesterday was one of those days that I’m so grateful for my friends with CF. I’m a strong believer in surrounding myself with people who are better than I am – it’s a real ego destroyer, but it’s also an amazing life hack for self-improvement, no matter what the goal. While on the treadmill, I used an app called Marco Polo and spoke to two friends of mine with CF – both who are amazing runners and make sure to get in exercise daily themselves. I complained to them about how crappy I was feeling the past few days. I told them how my lungs were feeling so tight and I could hardly run at all compared to a week ago.

My goal every time I run is 30 minutes. Whether it’s running 5 minutes and walking 3, then repeat; or running 2 minutes, walking 2, then repeat – I’m on that hamster wheel for 30 minutes.  I need to have a goal and structure to survive the nightmare that is running. Ha.

“Run for longer today,” one of my friends said when she messaged me back on Marco Polo.

“WHAT???” I replied with an angry face in my video.  

“On days you feel worse, work out longer than you normally would,” she emphasized.

I almost threw my phone across the gym. I was so miserable I didn’t think I could even make it to 30 minutes, let alone longer.

Then I remembered – the woman I was talking to has half the lung function I do. Half. She’s a mom, takes care of 2 kids by herself, and she can run farther and longer than I can. If she can do it, so can I.

I was still only able to run for 2 minutes straight yesterday, but I ran 2 minutes walked 2 minutes for 35 minutes, instead of my usual 30. Halfway through those painful 35 minutes, my other friend sent me a message stating that he agreed with what had already been said – suck it up and exercise for longer. (He runs several miles a day, every day, like a maniac, so he further reinforced my need to push myself in the gym).

I can’t tell you how much better I feel today. My lungs are more clear, more open, and I feel so much better both mentally and physically. I’m not sure I would have pushed myself so much yesterday if it hadn’t been for my two friends offering support when I needed it, a.k.a. a swift kick in the butt.

Growing up, I didn’t have friends with CF. I didn’t go to CF camp, I didn’t come across a lot of kids with CF at clinic, so I didn’t have the benefit of these amazing interactions when I was young. At the time, I’m not sure I saw the need. Heck, I’m not sure I saw the need even a few years ago. I had no idea what I was missing out on, though.

Having friends with CF offers a dimension to life that I never thought was possible, and that I didn’t realize I needed. I’m not saying we should all be friends with every person with CF on the planet – but finding your tribe can be life-changing. Yup, I said it. Truly life changing.

Here’s to laughing, exercising, vesting, coughing, insulin-ing and CFTR-modulating together, CF community! We are so fortunate to have each other. FIGHT ON FOREVER!