Blog & Events, Families we have assisted

Meet Amara ~ Extended Hospital Stay Grant Recipient

August 9, 2017

Currently we have 2 individuals doing phenomenal fundraisers for Claire’s Place Foundation.  Doug Forsyth just completed his 31 day, 3800 mile bike ride across America and Riki Rachtman has just completed 10,000 miles on his motorcycle for #RikisRide17.  We want to show you what their efforts have done for this family and many more over the last 2 months.

Amara was referred to us by Boston Children’s Hospital as having “severe Cystic Fibrosis” and being evaluated for lung transplant at the very young age of 6 years old.  Cystic Fibrosis has many genetic mutations, some more difficult to manage than others and some patients have coexisting conditions that make it even more deadly.

Amara has been hospitalized for over 3 months since January 2017, one of the stays included a very severe infection that ended up in her needing to be intubated.  Luckily, she was strong enough to recover but it has resulted in both significant emotional and financial stress for her single income family who is struggling to stay with her and provide her with the support and love she needs.

Due to the hard work of both Riki and Doug and all the people who sponsor and support their efforts, we were able to assist this family with back rent and associated late fees.

Amara’s mother writes: “As a parent of a child as sick as mine, it feels so refreshing to know that there are people who care.  Any support goes a long way and my family and I are so grateful for this gesture.  I pray that this organization is able to help other families in need as they have helped mine.  Thank you beyond expression!”

Riki and Douglas, thank you from the bottom of our hearts!  Your efforts are herculean and are directly helping kids and families every day here at Claire’s Place Foundation.  BIG thank you to all the sponsors as well:  Hermosa Cyclery, Identified Talent Solutions, Dixon Construction, DIAL Insights, Glastonbury Dental AssociatesLafayette-DuPont#19 Fan Page, MESH, Hot Leathers, LawTigers, DeathWish Coffee, RonzWorld Guitars and GFrames 

There is still time to donate to each fundraiser, let’s show them some love ~

Cycling America for CF Facebook Page (be sure to watch the video of Douglas crossing the finish line in NYC yesterday! To donate on his FB page, click “shop now”)

Rikis Ride 17 Website – You can follow him on social media by using the hashtag #RikisRide17

 

Press

August 2, 2017

Will.i.am Goes Back to His Roots During WORLDZ Titan Award Speech

Hollywood Reporter
10:49 AM PDT 8/1/2017 by Rachel Ettlinger

Jerod Harris/Getty Images Will.i.am

Brands like 20th Century Fox, VICE and Reddit all came together early Monday morning for a two-day summit to learn from and network with peers across different facets of the business world.
The Loews Hotel in Hollywood became a playground for young and established business hopefuls and executives from all over the world at the WORLDZ Chapter 2: Losing Sight of the Shore conference, which hosted brands from Facebook to iHeartMedia.
More than 150 speakers, ranging from Caitlyn Jenner to Shaun White and keynote Will.i.am, took over the two-day cultural marketing summit.
“I went to an all-white school and grew up in a Mexican neighborhood, but the whole thing was to dream your way out,” said Will.i.am, who was given the Titan award during his address for his work founding i.am+. “I’m not going to pay attention to my nightmares, and ignore my dreams. Everyone was like, ‘Oh, I’m going to keep it real,’ and I was like, ‘I’m going to keep it imaginative.'”
The Hollywood Reporter and Billboard’s president, John Amato, also made an appearance at the event’s opening “Meet the Masters” series, where he spoke one-on-one with WORLDZ attendees about the two media brands’ missions and goals for the future, as well as to give advice to other business professionals.
“The future of what media is and how all this stuff is converging, it’s like all these companies in the world — literally, Apple, Amazon and Google — all have serious music initiatives,” Amato said. “Those same companies all have serious entertainment initiatives and being the head of the biggest music and entertainment media brands in the world, I think, just makes everything so much more interesting.”
Neon posters guided more than 1,600 WORLDZ attendees, representing 40 different countries, around every corner with faces of the “masters” of the organization, such as Claire Wineland of the Claire’s Place Foundation, Sebastian Terry of 100things.com.au, CEO of Vaynermedia Gary Vaynerchuk, and the co-founder and president of Red Interactive Agency, Donny Makower, who all also spoke at the conference’s opening keynote.
While opening the conference at the keynote address, Roman Tsunder, CEO of PTTOW! and a WORLDZ co-founder, discussed why he created the conference for business officials of all levels in the first place.
“It’s our greater intention to help make your journey,” Tsunder said in an address to the audience. “The reason we call it WORLDZ is because we want to take you and your world, and collaborate with you and your world to create the most inspiring outcomes.”

Press

This girl with a terminal illness is using social media to normalize death

August 2, 2017

This girl with a terminal illness is using social media to normalize death

By Nathalie Basha

Circa

December 04, 2016 09:55 PM EST

Claire Wineland is 19 years old, but she already has a very close relationship with death. She has cystic fibrosis, a chronic and progressive disease that will eventually end her life.

But Wineland is using social media, and her very positive attitude, to normalize death and illness. Her message is that you can not only have a great life despite pain and suffering but because of it.

“The people who have been through the most are the people with the most to give” ~ Claire Wineland

She uses herself as an example. Cystic fibrosis is an all-consuming, terminal disease that has caused her to spend a third of her life in and out of the hospital. It creates an overload of mucus in the body that coats all the internal organs, and over time, causes them to shut down.

But she’s not only happy, she’s thriving. She lives a very full life and she credits CF for giving her the ability to see the beauty of life through her pain. She encourages her followers to find the same beauty.

 

She is vivacious, laughs easily and breaks off into passionate tangents, and she is exceptionally eloquent. Now, she’s also a professional speaker. Her inspiring talk at Zappos is excerpted in the story, but is worth a full listen.

Claire and her family have started a foundation to help other children living with CF. Claire’s Place Foundation gives grants to provide financial support to families living with cystic fibrosis.

Claire’s life expectancy is up in the air. It’s been pushed back from 10 years old, to 15, and now it’s the early-to-mid 20’s. She could die next year, or she could live for decades more. That part depends on the medical advances made for CF (there is no cure, only management of the symptoms) and Claire’s own determination to work on her health.
In the meantime, Claire says she’ll continue to use social media, public speaking and her foundation to help people live their best lives.
Check out Claire’s Instagram, YouTube  and  Twitter accounts for some serious inspiration.

Nathalie Basha
Nathalie Basha is Circa a Multimedia Journalist for Travel and Leisure, based out of Los Angeles

Blog & Events, Families we have assisted

Meet Allison ~ Extended Hospital Stay Grant Recipient

August 2, 2017

Allison’s story is very relevant to today’s insurance debate and we were grateful to be able to make a difference for her, even if only a small one.  Allison is a young woman with Cystic Fibrosis who recently lost her Medi Cal insurance which is devastating for anyone living with a chronic illness like “CF”.  Being privately insured demands that the individual pay exorbitant co pays and are expected to pay very high “out of pocket” expenses for a calendar year.  In Allison’s case, her yearly deductible was met in February due to such high medical costs and her illness makes it very difficult for her to maintain a steady paycheck.

Allison with her loving family, second from the left

Allison was referred to us by our friends at the Cystic Fibrosis Foundation’s Compass Program, a personalized service to help you with the insurance, financial, legal, and other issues you are facing.  She came to us with a hospital bill that she had been chipping away at but was still out of her reach.  We were thrilled to be able to make a payment towards her bill but were unable to pay it in full.  We have committed to working with Allison and her hospital to help pay this down as funds allow.

Allison writes “I have been having financial hardships since the end of 2016 due to medical costs and issues. I was denied from Medi-cal  and could no longer afford my medications out of pocket. With my new insurance, I was expected to pay $5,700 for out of pocket expenses for the 2017 calendar year. With high medical costs, my deductible was met in Feburary 2017. Since January I have had 3 hospital stays amounting to a bill of ___ dollars. I am very grateful to Claire’s Place Foundation for contributing towards my bill. I have had a stressful year and receiving help from this foundation has helped put my mind at ease.”

Thank you for all of your support dear donors!  Your donations are hard at work in our community making a difference for people like Allison

This grant was made possible by 2 fundraisers going on right now!  Riki’s Ride 17 and Cycling USA for Cystic Fibrosis.  Way to be awesome guys! Let’s show them some support!

Blog & Events, Families we have assisted

Meet Lori ~ Extended Hospital Stay Grant Recipient

July 17, 2017

Lori is a young woman with cystic fibrosis that was referred to us by her hospital social worker.

Her referral reads “Lori is a beautiful and strong young woman living with cystic fibrosis. We have witnessed her endure numerous obstacles, while simultaneously participating within the CF community. Any assistance that you may provide to her and her family would be greatly appreciated.”

Lori had just been hospitalized for a long period of time and she and her fiance desperately needed help catching up on bills as she tried to return to her daily life.  Because of you, our generous supporters, we were able to provide them with a grant to cover one month’s expenses so they could get back on their feet.

She writes “Thank you so much for all that you do. I appreciate how much you have helped my me and my fiance with the Extended Hospital Stay Grant, it has made a huge difference!

Thank you to all of our supporters ~ your donations are hard at work in our CF community and are making a real difference for many children, young adults and families.

This grant was made possible by 2 fundraisers going on right now!  Riki’s Ride 17 and Cycling USA for Cystic Fibrosis.  Way to be awesome guys! Let’s show them some love!