Families we have assisted

Meet Elijah – Extended Hospital Stay Grant Recipient

August 14, 2018

This is Elijah, he is an incredibly charming and precocious young man with cystic fibrosis who recently spent many extended stays in the hospital.  Not only that, but his brother also has cystic fibrosis and his older sister suffers from sickle cell disease.  I cannot imagine what this family goes through on a daily basis taking care of all 3 children’s medical needs, working full time jobs and trying to make time to enjoy their life.  Their parents work hard to ensure that their children are well and that they also complete their school work as well as a few extra curricular activities.  It cannot all be about staying well and they have somehow achieved a great balance.  This grant was special because we were able to help this family get caught up on all of their bills and help them pay for graduation fees and a class ring for their daughter, who even though she missed quite a bit of school last year, was able to graduate with her class mates.  If you have ever walked in the shoes of a family like this, you will understand what a huge feat this is! Big congratulations to this family for working so hard, staying positive and being a shining example to others in difficult situations.

Elijah’s parents write “Claire’s Place Foundation has allowed me to catch ALL of my bills up. I ended up behind on my bills due to my son and daughter being hospitalized.  In addition my daughter had senior fees, dues and trips I was trying to pay for.  She has worked so hard despite her disease and I didn’t want her to miss out on her senior activities just because we didn’t have the money. This is truly a blessing for my family as a whole.  

I honestly can’t express how grateful I am.  I was literally speechless when I read the email and just began to whisper because I was overtaken with such joy.  I really don’t feel deserving but I believe its God’s grace and mercy that allowed us to get this grant. The grant has alleviated so much financial stress that my family as a whole are without words. As we read the email we just stared at one another thanking God and thanking God for you.   Thank you……”

 

Thank you to all of the people who support this program ~ you are the reason we were able to assist in such a big way.

Families we have assisted

Meet the K Family ~ Extended Hospital Stay Grant Recipients

June 26, 2018

I love all the K’s  – meet Kyle, Kaylan, Karter and Kade 🙂  This beautiful young family has 2 boys diagnosed with cystic fibrosis, Karter and Kade.  Unfortunately, their younger son Kade, has had many many hospital stays and a much rougher time with his illness than his older brother Karter.  Being available for both boys while running back and forth to the hospital, doctor visits, lab checkups, hotels, gas, etc. has put them in a very difficult financial situation.  As we have said before, many CF families decide that at least one family member must stay home to care for the child while the other becomes the breadwinner.  But, what if that just doesn’t cover the bills plus all the extra care needed to make sure your children are covered by insurance and all of their daily needs are met?  This brings us to a situation where both parents must work and still try to juggle everything on their own. Sounds impossible, right?  Well, we agree!   We are so grateful that we were able to be a small bridge for this family while enduring another extended stay for young Kade.  Their mother writes “Receiving this grant was an amazing blessing for our family.  Between our 2 CF kids, I have had to miss 12 days of work just in the last month.  Missing those 12 days means that I don’t get paid because I am out of leave time.  This grant allowed the bills to get paid and we didn’t have to stress while helping our children.  That helps ease a parents heart so much!  Again, we are so very thankful for this grant.” Big love to all of you who have recently started following us or joined our mailing list and donated.  You are the reason we are able to help families like this, to know that they are cared for by a large community and that they don’t have to do this all alone.

Press

Claire’s Place Foundation’s Founder wins Glamour Magazine’s College Woman of the Year Grand Prize

June 12, 2018

What an incredible honor ~  Thank you Glamour Magazine for recognizing our Founder Claire Wineland as your Glamour College Women of the Year Grand Prize Winner!  The $10,000 grant will help Claire continue her efforts to support her cystic fibrosis community by providing financial and emotional support to those living with this disease and their families. Read on to find out more about these amazing and inspiring 2018 winners!

Meet Glamour’s 2018 College Women of the Year
BY JESSICA MILITARE
JUNE 4, 2018 8:00 AM

What were you doing in college? Trying to solve hunger? Researching the effects of the 2010 BP oil spill? Trying to rewrite the narrative around revenge porn? I know I wasn’t doing any of that. But I know a few people under 23 who are.
I’ve worked on Glamour’s College Women of the Year competition for three years—in which for over six decades we’ve honored students across the country making a difference on their campuses and beyond. Alums of CWOTY, as we call it, have gone on to become renowned businesswomen (ahem, Martha Stewart, class of 1961), championship-winning athletes, and elected officials. But what’s amazing about these students is that they don’t wait for anyone to give them permission to make change; they’re getting things done now, and on their terms. You might think that with each passing year, I’d feel more depressed about what I haven’t yet accomplished compared with these trailblazers. But really, I feel unbelievably hopeful and excited knowing that the future is in their hands.
This year’s class of winners is no different. Read their inspiring stories ahead and what motivates them to keep going.

PHOTO: ANNA ZHANG
Amanda Gorman, 20, Harvard University
TV was limited in the Gorman household, so Amanda and her twin sister got creative: She started writing poetry at age eight, and they’d put on musicals to entertain themselves. “I was an artist and a creator from a young age because I had to be,” Gorman says. But at school kids pointed out that Gorman talked and sounded different because of her speech impediment. “I just told them I was born this way,” she says. “Now experiencing that type of discrimination makes me take pride in having a marginalized voice.”
Today the sociology major is the first-ever Youth Poet Laureate of the U.S. and has read her work at the Library of Congress and on MTV (Hillary Clinton and actress Cynthia Erivo are fans). Her poem “In This Place (An American Lyric)” was acquired by the Morgan Library and Museum in New York City, where it’s on display alongside works by Elizabeth Bishop. Take that, haters.
Inbetween touring the country to read her poetry (one of her recent gigs was performing a poem at an event honoring Lin-Manuel Miranda and Dick Van Dyke at L.A.’s Geffen Playhouse), she runs One Pen One Page, her literary organization that provides free creative resources from students in America and around the world. No pressure, but Gorman also wants to run for president one day.
“It’s not that I want to run; it’s that I’m going to run,” she says. “Seeing the ways that I as a young black woman can inspire people is something I want to continue in politics. I don’t want to just speak works; I want to turn them into realities and actions.”

PHOTO: BRANDON Y LEE
Ann Makosinski, 20, University of British Columbia
Ann Makosinski was inventing from a young age: She’d piece together garbage with hot glue, and play with transistors. She’d devour biographies about science icons like Marie Curie and Albert Einstein. “I even renamed myself Andini, after Harry Houdini,” she says, after she read a book about the famous magician in the fifth grade. She actually prefers to go by that name. “His performance style inspired me when I started presenting at science fairs,” she says.
That same curiosity carried into her teens: When she was 15, Makosinski learned that a friend in the Philippines failed a grade because she didn’t have electricity to keep the lights on to study. So she invented a flashlight that runs on the heat of the human hand, no batteries needed. It uses thermoelectric generators—otherwise known as Peltier tiles—to work with body heat to produce light. She won the Google Science Fair in her category for that invention and is now aiming to bring her idea to market through her own company, Makotronics Enterprises. Meanwhile, she keeps dreaming up other ideas like her eDrink prototype, which converts excess heat from coffee into electricity to charge a cell phone. Makosinski travels the world speaking to kids about electronics and is hell-bent on redefining what an inventor looks like.
“The portrait of an inventor in the media is usually a guy hunched over tinkering in a big fancy lab,” she says. “I’m not that. I want kids and young girls to see me and think, Hey, if someone just like me made something, maybe I can make something too.”

PHOTO: LUCY HEWETT; MAKEUP: JENNA BALTES
Bushra Amiwala, 20, DePaul University
After the 2016 presidential inauguration, Bushra Amiwala, who interned for Illinois Republican Senator Mark Kirk was invited to speak to a class of first through third-graders at a Muslim education center about getting involved in politics. She asked them: “How many of you want to run for president one day?”
“All of them raised their hands,” she says. “But when I followed up with: ‘How many of you think you can run for president one day?’ all of their hands dropped. I realized that if I ran, these are the students I’d be impacting. They’d see my candidacy and be like, ‘I can also run.'”
Amiwala realized that all of the issues she wanted to work on in her hometown of Skokie, Illinois—hunger, homelessness, education—could be tackled at the local level. So last year she built a team of 250 volunteers and became the first Muslim American woman and youngest person ever to run for a commissioner seat on the Cook County Board, against the male incumbent. She lost in March but registered more than 2,000 people to vote, and 30 percent of her votes came from people who voted for the first time. “My campaign was more than just getting elected,” she says. “It was a movement of people who’ve been neglected in politics banding together to push back.” Now she’s starting an organization to help minorities run for office. Her message to women running in the midterms?
“You can do this,” she says. “You’re going to have hundreds of people tell you that you can’t, but you’ll also have thousands of people tell you that you can, just not as loud. The support is there, you just have to find it. Believe in yourself first.”

PHOTO: LARISSA PEROUX
Claire Wineland, 21, Santa Monica College
Claire Wineland has a ritual every time she checks in to the hospital room she’s occupied on and off since she was four: She rearranges the furniture and plasters the walls in butcher paper. Sometimes she paints bricks to make the room look like a loft.
Wineland has cystic fibrosis, a genetic disease that produces an overload of mucus in the body and affects most of her organs. It’s hard work just to stay alive: She does five hours of breathing treatments a day and takes nearly 50 medications. Her life expectancy is her midtwenties, and she’s now 21.
“You’re on this constant stop-start where you start living your life and then you have to get plucked out of it and go to the hospital for a few weeks, which makes it hard to have anything that’s grounded,” Wineland says.
Two days after her thirteenth birthday, Wineland had a near-death experience: After a routine surgery she got a blood infection and her lungs collapsed. For nearly six hours she was awake while dying. “I got this feeling of grief; I was sad for all of the things that I could have done and the person I could have become,” she says.
Wineland was put in a medically induced coma for three weeks, and after coming out of it, she had a huge support system around her. But she noticed many other sick kids and their families didn’t have as much help. She started Claire’s Place, a foundation to support people with CF and their families, including covering costly medical bills, rent, or breathing equipment. To date she’s aided more than 100 people with CF. And on YouTube she challenges stereotypes about terminal illness (see her millions-viewed videos “What It’s Like to Be in a Coma,” and “Dying 101”). She was recently approved for a lung transplant, a crucial surgery for young adults with her disease.
“Everything I’m proud of comes from some of the darkest things in my life,” Wineland says. “My purpose is to help more people feel comfortable with their pain and realize that they have a lot of power and a lot to give regardless of whether their life seems normal or not.”

PHOTO: KELIEE YU
Keiana Cavé, 20, University of Michigan
After the 2010 BP oil spill, Keiana Cavé, then 16 years old and living in New Orleans, noticed something missing from the news coverage around the environmental disaster. “I remember googling, ‘What’s happening between the UV rays from the sun and the oil sitting on top of the ocean? What’s actually going into the sea water?'” she says. “Nothing came up.”
Cavé ended up contacting 30 professors at area colleges about her desire to research the spill. One at Tulane University answered, and Cavé dived into working there. Her research ­revealed that cancer-­causing molecules had developed in the water less than 12 hours after the spill. The accolades followed: She won second place in the earth and environmental sciences category at the Intel International Science and Engineering Fair. And after winning first place at MIT’s Global Entrepreneurship Bootcamp, Chevron caught on to her work; they gave her a $1.2 million grant to start a lab at U of M, where she’s developing an oil dispersant to detect and neutralize toxic agents.
The Forbes 30 Under 30 for Energy recipient would like to solve other problems too: the global water crisis, for one. She wants to serve as CEO for a major energy company, and empower other women in STEM. “I want to be a fixer, like the Olivia Pope of science,” she says. “If anyone has a major issue, I want to find solutions for it.”

PHOTO: CHLOE CICCONE
Leah Juliett, 21, Western Connecticut State University
At 15, Leah Juliett had just come out as a lesbian when a boy at their high school posted nude photos of Juliett on the Internet. “I was coming to terms with my sexuality, and then I saw all of the things I wanted to accomplish disintegrate around me,” Juliett says. They fell into a deep depression and pattern of self-harm, but after healing and sharing their story at poetry slams, they wanted to prevent a similar experience from happening to others.
Juliett went on to start the March Against Revenge Porn, a cyber civil rights campaign that advocates for Internet safety, especially for LGBTQ people, federal lobbying, and cyber sex education. They are currently working on legislation in Connecticut that would make revenge porn a more punishable crime.
Last year Juliett held the March Against Revenge Porn in Brooklyn. A few months later New York State voted in successfully criminalizing revenge porn. “Our efforts put revenge porn on the minds of legislators and made a difference,” Juliett says. This year Juliett has more marches planned: In Boston and Pittsburgh this month, and one at the University of Hawaii in October.
This month Juliett, who came out as nonbinary in college and uses they/them/their pronouns, founded the National LGBTQ+ Youth Town Hall, a grassroots political mobilization campaign event for voting-age queer and trans youth to interact with politicians. And they’re sharpening their political chops, having interned for Senator Chris Murphy and Congresswoman Elizabeth Esty. Says Juliett: “I want to be the first nonbinary senator of the United States.”

PHOTO: AP PHOTO/RICHARD DREW

Simone Askew, 21, United States Military Academy
Simone Askew went to Army-Navy football games as a kid in Virginia with her mom and sister and was fascinated by the cadets leading in formation. Her favorite part was when the midshipmen would march onto the field at the beginning of the game. “It sparked an interest in the discipline and the order of those march-ons,” she says.
As a teen, Askew was eager to go to the Academy; she even missed getting crowned homecoming queen to attend a West Point recruiting event. As a student there she’s made history: Last year Askew was chosen as the first African American woman to serve as First Captain of the U.S. Military Academy’s Corps of Cadets, the highest-ranking student post, overseeing 4,400 students. As a survivor of sexual assault, one of her missions as First Captain has been changing the approach to assault and prevention at West Point.
“I’ve pushed our education toward showing cadets what respectful relationships and behavior looks like, not just [telling cadets] don’t assault and don’t harass people,” she says.
Askew graduated in May, but next on her very impressive agenda: Attending Oxford University in the fall as a Rhodes Scholar where she’ll study refugee and forced migration. Later she wants to enter the Army’s Corps of Engineers.
“I want to serve as long as the army will have me,” she says, “and lead with a purpose and lead honorably wherever I am.”

PHOTO: DOUG DUBOIS
Zahra Arabzada, 22, Hobart and William Smith Colleges
When Zahra Arabzada was growing up in Taliban-ruled Afghanistan, girls weren’t allowed to play sports. But her parents sent her to school, and when she was 10, she got the chance to run her first three-kilometer race in another province; she ran it in flip-flops. “At the end of the race, I said, ‘I’m never doing this again.’ I was so sore,” she says.
Through hard work Arabazada got accepted to the first female boarding school in Afghanistan and later landed a scholarship to a Rhode Island boarding school. It was there that she fell in love with cross-country, but was wary to run because no one else looked like her. Arabzada changed her mind when she went back to Afghanistan and was explaining the foreign concept of running to her mother. “It seemed like she wished that she could have this escape and I recognized my privilege,” Arabzada says. “How I dress shouldn’t stop me, because my mom would die to have this opportunity.”
She put herself all in: Arabzada’s now tackled three half-marathons, one trail marathon, and a 50-mile ultra-marathon, all chronicled on her blog, The Hijabi Runner. There she writes about what it’s like to fast and train, and about her life back in Afghanistan. She also mentors a running team there through Free to Run, an organization that uses sports to empower women and girls in conflict-affected regions. Her goal?
“I hope my story helps another Muslim woman to go for even a one-kilometer run.”

PHOTO: ESLAH ATTAR; HAIR AND MAKEUP: VICTORIA STILES
Maria Rose Belding, 22, American University
Volunteering in food pantries her whole life, Maria Rose Belding, who has diabetes, saw processed food available but very few fruits and vege­tables. “One time we got a donation of 10,000 boxes of macaroni and cheese,” she says. “We were making phone call after phone call and sending emails to try to find a place that could take this extra food. I remember saying, ‘We have the Internet—why haven’t we solved this?’” Then she noticed local restaurants and markets throwing away healthy perishables.
So at 15 she launched MEANS (Matching Excess and Need for Stability) Database, a nonprofit and communication platform that alerts food banks and pantries when food that would have been tossed is available. To date, MEANS has recovered and distributed over 1.7 million pounds of food and is active in 49 states. Puerto Rico is next on their list. Belding keeps the stories of MEANS’ partners close to her heart: the food pantry they serve that operates without running water; the elderly woman who runs a pantry out of her church. What does she want to say to anyone who doubts her ability to help solve hunger?
“Come to work with me and I’ll show you otherwise,” Belding says. “There’s so much astronomical need that, realistically, we’re not going to make food insecurity disappear. But that doesn’t mean we can’t move the ball down the field.”

PHOTO: JOEY ROULETTE
Karen Caudillo, 22, University of Central Florida
Karen Caudillo remembers the salsa-music parties her Mexican father threw in Florida, where she grew up. But when she watches home videos now, she can count who’s been de­ported.
“[It was] moms, dads, grandparents, sisters, brothers, boyfriends, girlfriends,” she recalls. “Right now it’s a time for people to come out of the shadows. All we want is to be treated equally and with respect and dignity.”
“Even to this day I’m scared of my phone dying because sometimes I think it might be my mom or my dad, detained for no reason,” she says. That’s why she’s out there fighting for her family and for others: The DACA recipient and activist fasted outside the U.S. Capitol last year for four days with United We Dream, trying to get lawmakers to pass a DREAM Act; a C-SPAN video of press interviewing her afterward got 11.8 million views. Now Caudillo is working to pass legislation as a student senator to make UCF safer for other Dreamers, while also advocating for farm worker and immigrant rights in Florida.
“Hopefully, we see a DREAM Act passed sooner than later,” she says. “We’re still living in limbo, but we’re still actively fighting, and one day we will see a pathway to citizenship for the 11 million undocumented folks living in the U.S.”
Read what the Glamour 2018 College Women of the Year think about activism, the Me Too movement, and the pressure to achieve.

 

 

 

Blog & Events

Our Glow Ride is now an Inner Glow Ride ~ Read more HERE

June 12, 2018

Hi everyone! So, this August 18th was going to be the date of our 4th Annual Glow Ride for CF in beautiful Hermosa Beach but we have had a huge change in plans. Our founder, Claire Wineland, has been listed for a life saving double lung transplant at UCSD and from what the doctors say, we could get the call at any minute.

As a very small organization, we simply do not have the emotional and physical bandwidth to put this event together while we focus on our upcoming transplant. We hope you all understand ♥ We have made the hard decision to change our glow ride from an in person event to an on line fundraiser so that we don’t leave the families that look to us for assistance “in the dark”.

The money we raise each year at our glow ride is a large piece of our yearly budget and Claire is committed to continuing her foundation, even in her absence. One fantastic thing to keep in mind is that 100% of any donation will go directly to our Extended Hospital Stay Fund since we will have 0 overhead in producing this event.

 

If you are inspired to support our Inner Glow Ride sponsored by Vertex Pharmaceuticals, please consider any one of these options:

1. Create a team on the Crowdrise page HERE and encourage your friends and family to help you get your inner glow on for children and families living with cystic fibrosis by donating to your team. The team that raises the most money will win our prestigious “Milky Way Award” and will be announced on August 20, 2018. This award will include either a personalized video message from Claire that you can share on social media or the option of having her record your voice mail message on your cell phone. We will also include CLAIRITY Tshirts to your entire team.

2. Donate as an individual to the Crowdrise page and help us reach our goal of $15,000. The individual that donates the most money will win our “Shining Star Award” and will also have the option of receiving a video from Claire or having her record your voice mail message on your phone, and a CLAIRITY Tshirt.

3. Donate anonymously to the Crowdrise page but share our campaign far and wide. Sharing campaigns on your social media channels and via email with your friends and family has been proven to bring in 3x the donations. So, please share away!

4. Make a donation to the Crowdrise page and “Get your inner glow on”. Please send us a picture all lit up at night to be posted on our event page and social media channels. We would LOVE to see you participate from afar either as an individual or with your group. All pictures welcome 🙂 Best group picture will be sent our custom CLAIRITY tshirts as a thank you gift for participating.

ALL donations and pictures are due by August 18th and awards will be posted on August 20th 🙂

So, as we prepare for Claire’s big surgery and a new chance at life, we are envisioning her being able to ride in her glow ride next summer with a brand new set of lungs. How cool would that be? We would love for you to participate in person again next year to help us celebrate.

We truly apologize for the last minute change in plans but being on the waitlist for lungs is so unpredictable. We look forward to seeing you all again next year! For those of you who already purchased a ticket, I will be reaching out to you privately with a few options.

2017 Glow Ride for CF Photo Claire’s Place Foundation Board Members, Event Sponsors and members of the Redondo Beach, Hermosa Beach and Manhattan Beach City Council along with our Founder Claire Wineland. Photo Credit: Julia Lofstrandt

 

 

Blog & Events

Claire’s Place Foundation Welcomes New Board Member

June 12, 2018

Welcome New Member ~ David Gersholowitz, MBA, Board Director

David Gersholowitz,MBA, Director

Read our Recent Press Release

Dave is originally from Cape Town, South Africa, but has never been on a safari or in a single gold mine. Rather, after a few attempts, his family moved to the US to pursue the American Dream. Cue “Out Of Africa” Theme…

Dave entered the veterinary field in 2005 when he joined BluePearl Veterinary Partners to launch a large practice in NYC. Working with an amazing team of doctors and staff, Dave grew the NY Region into one of the largest Specialty and Emergency practices in the country. In 2011, Dave transitioned into the COO role for BluePearl and was instrumental in BluePearl’s growth to over 60 locations in 20 states. Then Mars came knocking…

In early 2017, Dave joined Andy Loar, Dave Gardiner and Everett Smith to pursue the next great thing, which is of course veterinary diagnostics. The four musketeers came together to create ZNLabs Veterinary Diagnostics with a simple goal – revolutionize the veterinary laboratory field. We’re working on it! 😊

Dave is married and lives with his wife and two children, Adam and Nadia, in sunny Tampa, Florida. They share their place with their three dogs, Ollie, Fiona, and Kenny. In his spare time, Dave enjoys travel, driving manual cars and looking for deals. Dave earned a BS in Electrical Engineering from USF and an MBA from UCLA Anderson School of Management.

Dave reached out to Claire’s Place Foundation after reading a CNN article about Claire’s Place Founder Claire Wineland’s journey with cystic fibrosis. “We all face challenges in life and I am a strong believer that we each have a choice in how we respond to these challenges,” said Dave. “Claire’s amazing positive outlook on life and desire to help others despite her own challenges is truly inspiring. I was also impressed with the hyper-efficient, entrepreneurial nature of Claire’s Place Foundation. I knew I had to find a way to get involved. I am also excited for anything that brings me back for a visit to beautiful Southern California!”

“In addition to being a smart and driven entrepreneur, Dave is a compassionate, creative, giving and energetic individual. The moment the board met him, we knew we would be lucky to have him,” said Claire’s Place Foundation Executive Director Melissa Yeager. “Dave’s experience and business development skills are a huge asset to the foundation. He has already contributed to the foundation with his creativity, contacts and insight. He is continually thinking of new ways he can help. We are absolutely thrilled to have Dave join our board of directors.”