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Seventeen Magazine Shares Andy Grammer’s Inspirational Video

February 22, 2019

Exclusive: Cole Sprouse and Haley Lu Richardson Are Totally in Love in Andy Grammer’s “Don’t Give Up on Me” Music Video
It’s the original song for Five Feet Apart!

By Tamara Fuentes
Feb 21, 2019


* Cole Sprouse and Haley Lu Richardson star in the new movie, Five Feet Apart, as cystic fibrosis patients who fall in love.
* Andy Grammer wrote the original song for the movie and is donating the proceeds to Claire’s Place.
* Seventeen is exclusively premiering the video featuring Cole and Haley.

 

 

Cole Sprouse and Haley Lu Richardson’s new movie, Five Feet Apart, is almost here and it’ll likely be the big romance movie that we’ve all been waiting for. The two of them play cystic fibrosis patients who have to stay six feet apart from each other at all times. Finally fed up with constantly being away from each other, they decide to stand one foot closer to each other and start to fall in love in the process.

Check out the music video below:

Andy Grammer wrote the movie’s theme song and created a music video all about Will and Stella’s relationship. Seventeen got to talk to Andy about writing the song, what it means to him, and what it was like to meet Cole.

17: What made you decide to write this song?
Andy Grammer: “I think it’s one of the most basic parts of being alive with other humans is not giving up on them when things get hard. Sticking with someone through the hard stuff. I love writing about that.”
17: Did you get to watch the movie beforehand to get some inspiration?
AG: “I LOVED the movie. Ugly cried in a hotel room when I saw one of the first cuts. It’s a beautiful story. I lost my mom 10 years ago to breast cancer so stories told in hospitals hit home a little extra hard for me. Perseverance through disease especially in the name of someone you love will always be inspiring.”
17: What’s your favorite lyric from the song and why?
AG: “‘Don’t give up on me.’ It’s such a simple statement and it’s definitely been said before, but damn it makes me feel. Saying that to someone else usually packs a pretty intense punch. It’s very simple but powerful.”
17: You’re donating a portion of the proceeds to Claire’s Place, an organization that helps families dealing with cystic fibrosis. Why did you decide on that charity?
AG: “One of my best friends, Justin Baldoni, is the director of the movie. He and Claire had such a close relationship and she was a major inspiration for the film. As a surprise to him and to honor her I decided to donate a portion of the proceeds to her foundation. Claire’s Place is a support system for families and patients dealing with Cystic Fibrosis.”
17: Were you a fan of Cole Sprouse beforehand and did you get to meet him as they were shooting the movie?
AG: “Of course. Are there people out there who aren’t fans of Cole Sprouse? I got to meet him in Los Angeles. He was amazing in this movie, I can’t wait for everyone to see it.”
17: How has the song/movie inspired you in your own life?
AG: “Honestly, since the song has come out, the most inspiring thing has been the incredibly touching responses. With a message like ‘don’t give up,’ there have been a lot of people telling me how they were about to give up on their relationships, dreams, on occasion even as dire as their own life when hearing this song and it kept them going. That is just completely amazing feedback to get, it will never get old hearing these stories.”

 

 

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