Families we have assisted, Uncategorized

Meet Brian ~ Extended Hospital Stay Grant Recipient

January 21, 2019

Over the years, we have developed some very special relationships with social workers at CF Centers where there is a great need for additional family support.  One of those is the Children’s Healthcare of Atlanta whose social worker Judy is always on the lookout for a family in dire financial straits and is responsive and compassionate about finding them some assistance.  To date,  we have received and processed many referrals and the stories are both heartwarming and sometimes heartbreaking.  The city of Atlanta and surrounding areas has a median income for a family of 4 of  $53,843, as stated by Data USA and costs associated with cystic fibrosis can soar up to as high as $10,000 per medication not to mention hospital co pays, missed work, travel to and from the CF Center and care for other healthy siblings.  You can read more about this in an article on Georgia Health News that discusses the effect of low income regarding missed opportunities for advanced screening and cost of care.

A recent family that was referred to us by CHOA is Brian’s family.  Brian is 15 years old, has 1 sibling and shares his time between his mother and father.  Brian has recently developed Cystic Fibrosis Related Diabetes which makes his treatment regimen even more complex and his blood sugars now need to be monitored constantly.  In 2018, Brian experienced 4 long term hospital stays of at least 14 consecutive days in Atlanta and one recent stay at Cumberland Hospital in Virginia due to additional specialized care he needed that was not available at his center.  Cumberland Hospital is a 2 to 3 hour drive each way from his home near Atlanta causing a huge financial strain on a family that was already struggling to make ends meet.

The entire family is affected by cystic fibrosis from emotional needs to financial needs and everything in between.  We were honored to make a connection with this family and provide assistance with bills that were neglected so they could handle what was right in front of them.  The stress relief they experienced after having their outstanding debt paid and being current on all of their bills made such a difference.  Thank you to all who support this important program!  As always, we know and are constantly reminded that our program is valuable and is making an impact on families and young adults living with CF.

Brian’s mother writes:  “Due to our son being admitted at a hospital out of town, funds were very low after making sure he had the necessities he needed.  Claire’s Place helped us pay our past due bills and get caught up.  I am personally grateful and honored that I was awarded assistance.  Without your help, I wouldn’t be able to travel to see my son or for work.  This really was a true blessing that came right on time.  Forever thankful “

Press

‘Five Feet Apart’ Trailer Released Ahead of March Theater Opening

January 18, 2019

‘Five Feet Apart’ Trailer Released Ahead of March Theater Opening
AliBY ALI JAN 16, 2019

Haley Lu Richardson and Cole Sprouse push boundaries in Five Feet Apart. Image courtesy of Teen Vogue.

Prepare for romantic overload! The trailer for Five Feet Apart was released today — the same day as the Riverdale midseason premier, incidentally. Cole Sprouse and co-star Haley Lu Richardson play cystic fibrosis patients being treated in the same hospital. As characters in romantic dramadies tend to do, they fall in love over the course of their treatment but cannot get closer than six feet apart because of a risk of infection that could have fatal consequences. The trailer gives us a glimpse of a defiant Richardson taking back “one foot” so they can be “five feet apart.” What that will mean for the two of them remains to be seen.

Haley Lu Richardson and Cole Sprouse push boundaries in Five Feet Apart. Image courtesy of Teen Vogue. Click image to watch

As we reported back in November, there is some controversy about whether or not this movie is good for CF awareness:

“There are some who feel the movie is a wonderful way to deliver representation and awareness of CF and those who suffer from it. But others feel like it smacks of exploitation and is another example of Hollywood using able-bodied actors to play terminal-illness sufferers as a way to make the healthy feel relieved that they do not have these struggles.”

That being said, the actors have taken care to spend time with Claire’s Place Foundation in an effort to prepare appropriately for their roles. Hopefully this dedication to presenting the illness accurately and with compassion will show in their performances. Check out the trailer below for a sneak peek and see what you think!

 

The wait is over: the new #FiveFeetApart trailer is finally here. 💖 Are you ready to fall in love with this film on March 22?

Blog & Events

Introducing the Claire Wineland WORLDZ Scholarship Program

November 13, 2018

It is so wonderful to be a part of the WORLDZ tribe! Our Founder, Claire Wineland, was only 18 when she first met Roman Tsunder, Founder and CEO of PTTOW & WORLDZ. They connected through her involvement in My Last Days, the powerful docuseries created by Wayfarer Entertainment that aired on The CW Network 2 years ago. Roman and Claire had a synergy from the first moment they met.

In 2016, Roman invited Claire to speak at his PTTOW conference as their youngest speaker to date. Claire wowed the crowd with her candid story about living with illness and creating a life you are proud of.  For the years following their bond continued, sharing inspirational experiences.

Claire’s passing on September 2, 2018 inspired Roman to honor her in such a spectacular way. He partnered with us to create the first Claire Wineland Scholarship for WORLDZ.  This scholarship seeks out young people who are making a positive impact in the world. The recipients are awarded the unique opportunity to attend the WORLDZ conference where they meet with thought leaders from around the world and attend Master Workshops to learn more about growing their presence and honing their business skills. The conference is attended by some of the biggest leaders that are focused on making an impact and creating positive change.  Attendees include top executives from Amazon, hulu, Marvel, Samsung, Vans, Lyft, Rolling Stone as well as olympians and astronauts.

With the help of Wayfarer Entertainment, our inaugural class of 2018 attended the WORLDZ conference in October in Los Angeles. Beginning later this year, we will announce an application process to find our next class for the WORLDZ 2019 Conference and detailed information on how to apply.  We cannot wait to meet all of the amazing young adults and children that are making an impact in their community and in the world.

“Claire’s message is a bright shining reminder that we should appreciate and enjoy every moment we have on this planet, especially the times that are painful or difficult. We established a scholarship program to recognize courageous change-makers, who like Claire, have surmounted substantial life obstacles yet remain steadfast in sharing their voice and talent as a force of light in the world. I’m so excited by the inaugural class and believe with all my heart that through each of them, Claire’s radiant legacy will continue to blossom and flourish for many years to come.”- Farhoud Meybodi, Wayfarer Entertainment

The Worldz 2018 event was a huge success and we would personally like to congratulate our scholarship winners:

Marinda Davis: Instagram – @marinspirations Facebook  * Marinda is a choreographer and master teacher dedicated to opening hearts through dance. She was diagnosed with seven autoimmune diseases and told that she wouldn’t live past the age of forty. But Marinda is much more than the sum of her illnesses – she’s channeled her passion into a spectacular contemporary dance show entitled UNbreakable. UNbreakable tells the story of Marinda’s emotional and physical journey with illness, and highlights the resilience of the human spirit.

 

Caleb Remington: Instagram – @calebremington Facebook  *Caleb is a software developer at Ambry Genetics who’s passionate about anything outdoorsy. Caleb was diagnosed with Cystic Fibrosis and was told that he wouldn’t see past 18. Now, at 28, he is married to his beautiful wife, Tiffany Anh, lives life to the fullest, and works to raise awareness for the Cystic Fibrosis community. The couple is also world renowned for their beautiful wedding ceremony that became known worldwide as “The Greatest Wedding Ever Donated” that raised money for a multitude of charities and has become a huge inspiration.  GWED.com

 

Anthony Carbajal: Instagram – @carbajalphoto Facebook  *Anthony is a passionate street photographer and public speaker. Diagnosed with ALS at twenty-six, Anthony was determined to find a way to continue developing his love of photography. At his core, Anthony believes that while ALS is taking his strength, it’s not stealing his happiness, a sentiment he loves sharing with his family, friends and subjects in front of the lens.

Travis Flores: Instagram – @travisflores Facebook  *Travis is an writer, author, and speaker. Diagnosed with Cystic Fibrosis as an infant, Travis later published a children’s book, “The Spider Who Never Gave Up,” and went on tour to share his story of perseverance with the world. After receiving a Master’s of Science degree in Fundraising & Grant-Making from NYU, Travis sounds his time raising money for various organizations and serves as Executive Producer for DonateLife California / OneLegacy.

Zein Yousseff: Instagram – @zeinvolution Facebook  *Zein is a feisty 10 year-old hip-hop dancer, and black belt candidate in Taekwondo. He’s also a four time cancer survivor who was diagnosed with high risk stage 4 neuroblastoma when he was just 5 years old. Zein has experienced years of chemotherapy and brain surgeries yet hasn’t lost his zest for life or determination to spread joy to everyone he meets.

 

Today the world lost Claire Wineland – we will never forget her bravery and tenacity, she was an inspiration to us all. We send our thoughts and prayers to her family and friends during this time. Rest In Peace Claire.  <3″ The WORLDZ Tribe @Worldztribe

CF Caregiver Support Group

October 15, 2018

Caregivers need support too! If you are a parent, spouse, partner or caregiver for a CFer, please give yourself the gift of finding much needed support in our community. This call in support group is hosted by our dear friends at Cystic Fibrosis Research, Inc.and Stanford Children’s Health – Lucile Packard Children’s Hospital Stanford🤗

Next Group:  October 16, 2018

Two Groups to choose from:

Parents of children with CF:  5:00pm to 6:00pm PST

Parents/Spouses/Partners of adults with CF:  6:00pm to 7:00pm PST

Group meets the third Tuesday of Every Month

To participate Call 650-736-4444

Access Code: #070111028

Facilitated by Meg Dvorak, LCSW

CF Social Worker at Stanford

Group provided by CFRI

Press

CNN Article: Our Founder, Claire Wineland, dies one week after lung transplant

September 4, 2018

Claire Wineland; Photograph by Larissa Perroux

Claire Wineland, inspirational speaker and social media star, dies one week after lung transplant
By Jessica Ravitz, CNN

Cystic fibrosis did not define Claire Wineland. She did.

No matter the obstacles placed in front of her, of which there were many, she refused to be pitied and was determined to live a life that mattered. She inspired countless people, invited — no, demanded — honest talk about illness and mortality, and brightened the worlds of those she touched with her smile, spunk and spirit.

On Sunday evening, after being taken off life support and using the newly transplanted lungs she received just one week earlier, Claire took her last breath. The cause of death was a massive stroke she suffered soon after the transplant surgery. She was 21.

‘Love what is’

A quarter of Claire’s life was spent in the hospital. The medical team that tended to her became family. She played hide-and-seek with nurses and left explosions of glitter in her wake. She watched one of her doctors squirm as he gave her the safe-sex talk. She took great care to decorate her hospital room so it felt and looked like home.

Her parents, Melissa Nordquist Yeager and John Wineland, split up when Claire was 3, but they remained friends and partners in her care.

Her father credits Claire with teaching him “to not be afraid of what hasn’t happened yet” and to learn to “love what is.”

Yeager, who lost and quit jobs as hospital stays dictated, always marveled at her daughter’s aura and her ability to lift up those around her.

In 2017, Yeager recalled a conversation with Claire about death. At one point, Claire looked at her mom and said, “After you die, you’re closer to everyone you love because you’re part of everything,” Yeager remembered.

These words were a gift, a reminder that Claire would remain with her always, even after she was gone.

Trusting Claire

More than 30,000 people in the United States, more than 70,000 worldwide, have cystic fibrosis, according to the Cystic Fibrosis Foundation. The median survival age is 40, the foundation reports, which is a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.

Claire Wineland spent a quarter of her life in the hospital.

The genetic and progressive disease creates an overabundance of mucus, which traps infections and blocks airways in the lungs. It also complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.

There is no cure, but dutiful breathing treatments — which eat up hours each day — can help with symptoms and complications. A double-lung transplant, when successful, can add years to a patient’s life.

Claire’s parents learned to trust their independent and strong-willed daughter. When it came to her care, she knew her body best — what worked for her, what didn’t and how far she was willing to go.

So when she became a legal adult and told them she had no intention of getting a double-lung transplant, they had to accept her decision, even if it pained them.

“I had to be honest,” she once explained. “It’s not for me and never has been.”

A change of heart

Claire took the gift of life and her health seriously, but she didn’t take herself too seriously. She once escaped from the hospital so she could attend a Bernie Sanders rally. She laughed at the absurdities that often swirled around her, including those moments in the produce aisle at Whole Foods when shoppers would prescribe her unsolicited “cures,” telling her to eat more pineapple or that a mushroom cleanse would take care of everything.

Claire Wineland’s greatest wish, her mother said, was that “her foundation will live on, even in her absence.”

She was of the mind that she would leave this world with the body she came in with. She’d travel, answer calls for speaking engagements and put energy into her foundation, which she set up at age 13 after coming out of a 16-day medically induced coma. She’d work on a book — promising it wouldn’t be “another happy sick person book” — and appreciate the small things like swims in the ocean for as long as she was able.

At a TEDx talk she gave last year, Claire made a point of saying how cystic fibrosis helped give her a quality of life.

“Life isn’t just about being happy. … It’s not about how you feel second to second,” she said. “It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”

Claire had a change of heart about transplant earlier this year, prompted by a steep decline in her health that robbed her of the energy and ability to do what gave her joy and purpose. She wasn’t done contributing. It was a welcome, albeit terrifying, development for those who loved her.

To get on the list for new lungs, she had to be sick enough to need them, yet strong enough to withstand the surgery and recovery. Some people worried that she’d waited too long and wouldn’t be given the chance at continued life.

But Claire took on the evaluation process to get on the list with laser focus. She sat in an educational meeting at UC San Diego Health’s transplant center and diligently took notes.

Revealed on her left ankle was a tattoo: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”

She listened to the risks and the long list of side effects and emerged unfazed.

“None of it spooked me,” Claire said afterward. “Now that I’m looking at it as something I have to do … I’m willing to deal with anything.”

‘It’s a GO!!!’

In late May, she made the list and shared the exciting news with her social media followers who dot the globe. But then, a mix of health and life complications took a toll and knocked her off the list, temporarily. By mid-August, she was back on and feeling ready.

Claire and her mother beamed in a photo posted on social media after they learned her transplant was a go.

She’d worked hard to get there, was focused on her self-care and getting stronger. She joked that the squats she was doing, upon doctor’s orders, would help get her more than lungs. She’d also get a butt.

She knew that the call could come at any minute, and on August 26, it did.
“It’s a GO!!!” she posted on Twitter, not long before she was wheeled into the operating room in San Diego. “See y’all on [the] other side.”

The nine-hour surgery went well, and her mother reported that the lungs were working great. Yeager posted a video of herself doing a happy dance with friends in the waiting room.

But not long after the successful surgery, hope turned to fear. Claire suffered a stroke when a blood clot cut off blood flow to the right side of her brain. She never emerged from her medically induced coma. Despite emergency surgeries, and what her mother described as “Herculean efforts” to try to save her, the daughter she knew was gone. Given the severity of the stroke and Claire’s advance directive, it became clear that it was time to let her go. She passed away peacefully, with her parents by her side.

“They saw her into this world for her first breath and were with her for her last,” Laura McHolm, the board chair for Claire’s foundation, wrote in a Facebook post.

Last night at 6:00pm, Claire Wineland our inspirational founder passed away. She was not in any pain and the medical…

Posted by Claire's Place Foundation, Inc. on Monday, September 3, 2018

Less than 3% of lung transplant recipients have a stroke between the surgery and hospital discharge, according to the United Network for Organ Sharing, which operates the nation’s organ transplant system.
Claire, who understood the importance of organ donation, was a donor herself. On Monday afternoon, her mother received word that Claire had already made a difference.

“Claire was able to save the life of two people, her right kidney was transplanted to a 44 year old woman in San Diego, and her left kidney was transplanted to a 55 year old male in Northern California. Also, Claire’s corneas and tissue was recovered and she will be able to enhance the life of up to 50 people,” a family services specialist wrote to Yeager in an email message. “Claire’s gift is huge, I want your family to know that your daughter is a hero.”

The family intends to honor her memory by continuing to advance Claire’s Place Foundation, which she established to financially support others affected by her lifelong disease.

‘Go enjoy it’

In one of the last videos Claire posted, she went where she hadn’t before.
A self-described “goofball,” she usually engaged people with humor and optimism. This time, she was raw and allowed herself to cry. As she faced the prospect of getting a double-lung transplant, she understood how desperate she was to live — and give — more.

“It hurts everything inside of me to make this video,” she said into the camera. “I didn’t realize how much I didn’t expect to live this long. I didn’t expect to have a chance. … The years of telling myself I can do it on my own are over.”

She had plenty of emotional support, but she worried what transplant surgery might mean for her future and her parents’ future if it didn’t go well. What if they poured everything into her transplant, and she didn’t make it or was not able to work again, she explained later. She needed financial help. By asking for it, she said, she could relax and get in the headspace for whatever would come next.

Before signing off, Claire implored viewers to do one thing.

“Go enjoy your life. Really. I mean that seriously,” she said with her signature smile and laugh, her eyes not yet dry. “Go enjoy it, ’cause there are people fighting like hell for it.”

FULL ARTICLE on CNN.com