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CF Individuals are the Highest Risk Category for COVID-19

March 13, 2020

CF Families Advised to Take Preventive Measures to Avoid Coronavirus
MARCH 11, 2020 David MelamedBY DAVID MELAMED IN CYSTIC FIBROSIS, NEWS


CF Families Advised to Take Preventive Measures to Avoid Coronavirus
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With the outbreak of coronavirus (COVID-19) affecting thousands of people around the world, individuals with respiratory conditions such as cystic fibrosis (CF) need to take precautions, according to medical expert Richard K. Mathis, MD.

Mathis is a board member of Claire’s Place Foundation, a nonprofit organization that supports CF patients and their families. He has personally been caring for CF patients for over 40 years.

The term coronavirus refers to a class of viruses that also includes severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS). The name COVID-19 is an acronym for COrona VIrus Disease, and the year that it was discovered, 2019.

COVID-19 is an infectious disease that is believed to be spread through small droplets of moisture produced by sneezing or coughing. The primary mode of transmission is thought to be through person-to-person contact, but the virus can also live in droplets outside of a person. It is not yet known how long the virus can survive under external conditions.

The main symptoms of COVID-19 are fever, dry cough, and difficulty breathing. COVID-19 primarily infects the respiratory system, leaving CF patients particularly vulnerable.

In total, COVID-19 cases have been identified in over 100 countries. The disease has reached “community spread” — a term used when an illness for which the source of infection is unknown spreads throughout a community — in some regions of the U.S.

“COVID-19 is extremely infectious, and has recently achieved community spread status in the U.S.,” Mathis said in a press release. “This status means that individuals with CF and their household members are on the front line of the need for preventive measures.”

“The novel virus affects the epithelial cells lining of the lungs, which is detrimental to the health of someone with CF, as the epithelial cells are already damaged due to CF,” Mathis said.

Mathis strongly recommends people with CF consider whether it is worth attending a particular community gathering, as the risk of contracting the virus increases with the number of people. Public places and schools have already closed in some parts of the world to limit exposure.

Mathis also recommends wearing a N-95 face mask, a respirator mask designed to filter out droplets that potentially carry the virus.

Additional steps one can take to limit the possibility of infection include washing hands with water and soap for at least 20 seconds, using hand sanitizer with at least 60% alcohol content, and avoiding touching the face and eyes.

Inside the home, Mathis recommends frequently disinfecting any surfaces that are commonly touched, such as TV remotes. This is important because COVID-19 symptoms may not appear immediately, making it possible for a person to be infected and not know about it.

“It is vital that caretakers and family members of individuals with CF do not bring COVID-19 into their home, and follow preventive measures immediately,” Mathis said. “In fact, someone can carry COVID-19 without symptoms, bringing it unknowingly into the home.”

Mathis also recommends being proactive about any possibility of having the virus. If a person suspects he or she has contracted the virus, that person should stay quarantined at home.

“Fever and increased breathing difficulty require prompt medical care,” and CF patients should call their pulmonary or CF doctor if these symptoms appear, Mathis said.

As COVID-19 spread is a developing situation, it is important to monitor the websites of agencies such as the Centers for Disease Control and Prevention, the National Institute of Allergy and Infectious Diseases, and the CF Foundation for updated information, Mathis said. The World Health Organization is also providing updates.

David Melamed

WHAT CAN YOU DO TO HELP?

Please take measures to protect yourself and your loved ones with cystic fibrosis.

Make a donation today to Claire’s Place Foundation so we can be best prepared to help our vulnerable community when they need us.

Blog & Events

Giving Tuesday 2019!

December 2, 2019

HELP US REACH OUR GIVING TUESDAY GOAL OF RAISING $10,000 to continue Claire’s vision of supporting people with Cystic Fibrosis! (donations up to $5,000 will be matched by a generous donor)
There are two different ways today, GIVING TUESDAY!

  1. Create a FUNRAISE campaign by clicking “Fundraise” on our site, share it to your Facebook page, and help us receive donations through your social networks! (Takes about 5 mins or less)
  2. Donate directly to our FUNRAISE campaign via a one time donation or pledge a recurring donation!

Your donations and support mean that we can continue…

  • Making grants to support families and individuals living with cystic fibrosis, through the generosity of our donors, throughout the United States.
  • Connecting families who are isolated and in need of support to our group of “Support Families” through email, Skype or telephone.
  • Educating the community by engaging in public speaking, newsletters, press and media related to cystic fibrosis.
Blog & Events

CLAIRE YouTube Documentary

September 2, 2019

We are proud to announce the release of the documentary CLAIRE exclusively on YouTube. Directed by Oscar-winning filmmaker Nick Reed and Ryan Azevedo and Produced by Paul Foley, the film tells the story of Claire’s Place Foundation Founder Claire Wineland through interviews and footage, exploring her fight with CF and how she has inspired millions to find purpose and to live proudly.

Blog & Events

5th Annual Glow Ride for CF

August 7, 2019

Calling all Claire’s Place Foundation Supporters!

GET ON YOUR BIKES AND RIDE, let’s keep the Claire’s Glow Going!

Please join us for our 5th annual Glow Ride for Cystic Fibrosis on September 7, 2019. You can join us locally in Hermosa Beach, CA or for the first time ever you can join virtually. As a virtual rider, we are asking that everyone who participates helps us raise just $40 to support our Extended Hospital Stay Grant Program.

How do you do that you ask? It’s super easy! Follow the directions HERE and start your own virtual team today free of charge or register to join us in Hermosa Beach, CA. Each registered rider joining us in Hermosa Beach will receive a custom glow in the dark event tee with their $40 registration fee. And, each virtual team leader that raises just $40 will win a tee as a thank you gift – the tee’s will be shipped the last week of August so be sure to get your page up NOW!



Blog & Events

Amanda Jane Cooper and Carrie Manolakos bringing Oz to the Clairity Ball

June 1, 2019

Please join us for our First Annual Clairity Ball, an evening by the sea, celebrating the life and legacy of our late founder Claire Wineland. All proceeds will benefit families and individuals living with cystic fibrosis.

Photo Credit: Caitlin McNaney

Help us welcome two very special guests, Amanda Jane Cooper and Carrie Manolakos

We are thrilled to announce that Amanda Jane Cooper, who starred as Broadway’s 15th Anniversary Glinda in Wicked and Carrie Manolakos who starred as Elphaba in Wicked will be bringing Oz to the Clairity Ball by singing the meaningful song “For Good”. Prior to her 17-month run on Broadway in NYC, Amanda also toured as Glinda nationally from 2015-2017 and in 2011. You’ve seen her on some of your favorite TV shows like Glee, Jessie on Disney, CSI, Bones, Selfie and on NBC’s A Very Wicked Halloween this past October alongside Kristin Chenoweth and Idina Mendel as they all celebrated and sang for the 15th Anniversary special.

Carrie is a singer-songwriter and actress, she is perhaps best known for her stage work, on Broadway in Mamma Mia! as Sophie Sheridan, and on the second national tour of Wicked as Elphaba. She became an internet sensation after her cover of “Creep” by Radiohead went viral after it was picked up by Gawker, under the title “Eargasm“.

You can follow Carrie at @carriemanolakos and Amanda at @amandajanecoop

A very special THANK YOU to our dear friend Alice Issac for making this possible.

Held across from the beach at the Fairmont Miramar Hotel & Bungalows in Santa Monica, CA on Saturday, June 29th, this special evening will include passed hors d’oeuvres, cocktails and silent auction under a twinkle lit tree, celebrity guests, a sit down plated dinner, performances, awards and of course, lots of dancing. The evening will be anything but dull, in true Claire fashion.

We are thrilled to honor a few members of our extended family and community who have gone “above and beyond” in carrying Claire’s light and her legacy forward.

Justin Baldoni for his incredible work raising awareness for cystic fibrosis on a global level through his hugely successful directorial debut, Five Feet Apart.

Zappos for Good for their unending support of Claire both personally and professionally through Claire’s Place Playrooms and an upcoming project that we are so excited to share with all of you.

Vertex Pharmaceuticals, Inc. in acknowledgement of all of their scientific advances, as well as the wonderful programs and support they provide to our community on a daily basis.

Cole & Sanja Hatter of THRIVE: Make Money Matter for their continued support in sharing the message of Claire’s Place Foundation and for their incredible fundraising done since meeting Claire in 2016.

To find out more about our event and sponsorship opportunities, please visit the tab here on our site “Clairity Ball”