Helping Children &Families Living w/CysticFibrosis

by Claire's Place Foundation, Inc.
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Helping Children &Families Living w/CysticFibrosis
Mason and Grayson, Twins with Cystic Fibrosis
Mason and Grayson, Twins with Cystic Fibrosis

Hello dear supporters ~

First of all, thank you for your continued donations and support through GlobalGiving and social media.  We have had a great first quarter this year and wanted to share a few highlights with you.

This is a recent Extended Hospital Stay Grant Recipient Family:

Double the fun! For those of you living with cystic fibrosis or raising children with cystic fibrosis, you understand the hours of work that go in to each day just to maintain your health. Now, multiply that times 2! This young family came to us due to several hospital stays between their adorable twin toddlers Mason and Grayson. In their short 2.5 years, they have already spent months in the hospital while their father takes as much time off work to help as possible but is currently out of paid days off. The financial stress has caused this family to dip in to most of their savings and fear that as the children grow, the expense will just intensify. When I received their referral, my heart truly went out to them and if they lived closer, I would be the first to volunteer an extra pair of hands.

We were so grateful that we could be a small bridge of support to them while they were in the middle of a very difficult year. With your donations, we were able to pay all of the family’s bills for a month so that they could replenish their savings account and prepare for the next hospitalization. It is important for families to understand that it truly takes a village to raise a child with CF, much less twins. Your donations go a long way in bringing not only financial aid but the ever important emotional aid when families are desperate to stay with their sick child but bills are piling up in their absence.

Their parents write “This grant has allowed us to catch our breaths for the first time in a while. One of our twins has had a number of hospital admissions that have not only taken an emotional and mental toll on all of us but has drained our financial resources. My husband has used all of his time for the year, and if he needs to take time related to our boys’ medical issues, then he is not getting paid. This generous gift has given us a chance to replenish our savings to help prepare for future expenditures related to admissions and treatments. My husband and I are very grateful for this generous gift. A weight has been taken off of our shoulders and allowed us to put more of our focus toward enjoying time with our children. We are truly blessed and appreciative of all the wonderful and kind people that have been placed in our lives.

In other news, our Founder Claire Wineland, was recently named Glamour Magazines College Women of the Year Grand Prize winner for the work she does through Claire's Place Foundation.  Such an honor!  We hope you know that this win is also a win for you and all you do to support her cause.  You can find the article on Glamour's website link in this update.

Thank you for your continued support ~

Warmly,

Melissa N Yeager, Executive Director

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A few of the CF patients we have helped this year
A few of the CF patients we have helped this year

Happy New Year from our family to yours ~

Thank you for supporting a wonderful year here at Claire's Place Foundation. We thought it might be fun to share a bit about our 3 part mission as we close out 2017 and show you how your hard earned donations are being put to use in the CF community. Not only are your donations appreciated, but each time you "Like" or "Share" anything from us on your social media pages, you are helping us spread awareness about cystic fibrosis and the children and families living with it every day.

Our Vision
Providing emotional and financial support to families living with cystic fibrosis, inspired by Claire Wineland, a young adult living with this disease.

Our Mission
The specific purpose of Claire’s Place Foundation is to provide heart felt help to children and young adults diagnosed with Cystic Fibrosis, as well as their families, for the purpose of improving their quality of life. We hope to accomplish this by heightening awareness and providing education, skills, financial and emotional support.
Make your Year End Donation

Heightening Awareness
Vetting trusted avenues in the community in order to raise awareness and educate the public about cystic fibrosis on a national and global level
This year we have been blessed with several large speaking engagements and publications taking up our call to raise awareness about cystic fibrosis and what it means to live with this disease.

Links to recent media and public speaking engagements         

Providing Financial Support
Giving grants to assist families living with cystic fibrosis, through the generosity of our donors, throughout the United States
To date, we have given out over $110,000 to families in need. Our Extended Hospital Stay Grant Program has been well received at CF Centers across the country. The need for this program is apparent as we are the only nationwide foundation providing financial assistance on a family's behalf while they are in an extended hospital stay due to cystic fibrosis. If you know a family in need, please let us know.

More information about our Extended Hospital Stay Grant Program and families we have helped this year

Providing Emotional Support
Connecting families who are isolated and in need of support to our group of “Support Families” through email, Skype or telephone
Our Support Families Program aims to connect families who are in need of emotional support. Many people feel that relating to someone "walking in their shoes" is the most healing and beneficial form of support. We are here to help if you are isolated or in need of a support family to assist in your journey with cystic fibrosis.  Families seeking assistance will be offered support and information on how to work through the treatment and care process by other parent volunteers.

More information about our Support Families Program

Wishing you all a happy, prosperous and joyful 2018!

Melissa N Yeager, Executive Director

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Amara, age 7
Amara, age 7

We are excited to announce that this year has been our biggest fundraising year so far!  Thank you for your continued support as our programs reach new families in need in the cystic fibrosis community.

Here are a few stories of Extended Hospital Stay Grant recipients who consider their grant a true lifesaver during their time of need.  You can feel proud that your donations have made these grants, and many more, possible.

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 you, the donors who support our mission, 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!”

The fact that patients are living longer, fuller lives with Cystic Fibrosis is a blessing!  We at Claire’s Place Foundation initially began our mission to serve children under 18 but realized that young adults living with CF are out in the world trying to support themselves while dealing with a very high maintenance illness and are also in need of assistance.  We expanded our guidelines to include young adults and have been amazed by the super stars we have been able to meet.  Here is one, her name is Samantha..

Samantha and her husband James are both young professionals working to pay their way while dealing with her disease that is getting more and more difficult to manage.  This year alone, Samantha has been hospitalized 6 times, twice for over 14 days.  The stress of missed work and bills piling up in her absence is enough to take her attention away from her recovery, to say the least.

Being at the point of having to decide which bills can be paid and which ones have to paid late is not an easy place to be.  We were thrilled to be able to offer Samantha and her husband a grant that covered one month’s living expenses paid to the mortgage lender, utilities, etc. so that they could begin the next month with a clean slate and a little bit less of a burden.

Samantha says “I received the email saying we had been approved after I got off of work.  I literally sat in my car and cried tears of joy and relief.  We are so grateful, beyond words!  We know there are many families who request assistance and we are honored and humbled to have been helped.  We will happily pay it forward when we are able.  You are angels!”

Samantha and her husband James
Samantha and her husband James

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Meet Logan ~ Extended Hospital Stay Grant Recipient

Logan is an 11 year old boy living with cystic fibrosis and has had a particularly rough year.  He was referred to us by his CF Center Social Worker who let us know that he has been hospitalized 4 times in quick succession and the family was facing extreme financial difficulties as well as a move to a new city.  Logan’s parents made the decision that many parents of children with Cystic Fibrosis do and were depending on only one income so that one parent could take care of all the many hours of treatments, doctor appointments, missed school and hospital stays that constitute living with this disease.

Out of desperation and in an attempt to bring in more money, Logan’s father accepted a job for better pay in a city far from home.  The cost of moving expenses coupled with 4 hospital stays became too much to bear and the family was in a critical position.

We are so grateful that our supporters continue to make donations to the Extended Hospital Stay Fund so that we can help families like this.  We were able to cover the rent and utilities for the month of May so that they could take a breath and get settled in to their new home and new CF Center/hospital.

This grant was made possible in part by our friend Douglas Forsyth and the fundraising he is doing in honor of his young friend Connor, a 5 year old with Cystic Fibrosis.  Douglas is riding his bicycle 3400 miles from Portland, OR to New York City beginning in July.  Please support his efforts and thank him for his generosity by visiting his Go Fund Me Page to make a donation and following his Facebook Page.  Thank you Douglas and everyone who is helping with Cycling America for CF!  Your efforts are making a real difference in this family’s life.

Logan’s parents write “Our family took a huge pay cut so that my husband could attend a 2 week job training for his new position and at the exact same time, we were hit with another long hospital stay, the 4th this year.  Without help from Claire’s Place Foundation, we would not have had the money to cover our rent and make the move needed to start a better life.  Knowing that it was taken care of took a huge burden off of our shoulders and allowed us to focus on Logan.  We feel blessed! Thank you all

Teaming up with WT Farley to Help a Family in Need

Recently we were contacted by a family looking for assistance in acquiring a portable oxygen concentrator or POC for their teen, Caleb, who had become oxygen dependent due to cystic fibrosis.  This family went through a divorce and the mother, a now single parent with 3 children, was unable to find the support she needed in acquiring such an expensive device through her insurance.  Most of the time, insurance carriers will provide oxygen tanks for individuals with low income but tanks are very cumbersome and make it difficult for the patient, especially young and fairly active patients, to get out and enjoy their life.

This was a challenge we were willing to take on, especially given the fact that our Founder’s primary message is one of positivity and resilience.

We were lucky to find WT Farley, Inc., a local medical supply company serving the industry for over 45 years and known for offering Innovative, Truly Relevant and Reliable service for patients needing medical supplies including medical gas, accessories and equipment.  Not only were they helpful and knowledgeable, they were also inspired to donate the equipment to this family, what a blessing!

Working together, we were able to secure a brand new Inogen One G3 oxygen concentrator plus an over the shoulder carry bag for Caleb.  The Inogen One G3 is compact and lightweight making it easy for him to continue his active teen lifestyle.

Caleb’s mother writes “Caleb is so grateful for his new Inogen One G3 concentrator that allows him more freedom to leave the house! Thank you to Claire’s Place Foundation and WT Farley, Inc.

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Isis, A Grant Recipient
Isis, A Grant Recipient

Meet Isis ~ Our most recent Extended Hospital Stay Grant Recipient

We are so grateful for your support!  Your donations are always being put to good use in our cystic fibrosis community of children and young adults.  Read on to hear about Isis, our most recent Extended Hospital Stay Grant Recipient.

This was a first of it’s kind request and has left a real impact on all of us here at Claire’s Place Foundation.

Isis was introduced 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 when living with this disease.

Isis is a 27 year old woman with cystic fibrosis who found herself, due to some extenuating circumstances, homeless and living in a shelter.  Immediately our hearts went out to her as we could not imagine how difficult it must be to care for such a high maintenance illness while not having a place to call home.

Over the next 6 weeks, we communicated regularly as she tried various avenues for support in finding a place to live.  At one point, she was hospitalized and didn’t have anywhere to go when released with all her medications and continuous need for breathing treatments.

Isis worked very hard and was finally able to find an apartment complex that gives people like her a second chance but she could not afford the deposit plus utilities in order to move in.  We were thrilled to be able to provide that for her through our generous supporters and are happy to say that she is settling in to her new apartment and working at a new job!

I feel so relieved to have Claire’s Place Foundation on my side.  I am a strong believer in God and I believe He sent them to me to help get me out of homelessness. I want to send blessing to you all and your whole group for helping me.  It brings tears of joy to my eyes!” ~ Isis

Our hearts are with you Isis ~ we hope this new home offers you a fresh start and a clean, safe environment where you can take the best possible care of yourself and your illness.

Lots of love to all of you who help make this important program possible!

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Organization Information

Claire's Place Foundation, Inc.

Location: Redondo Beach, CA - USA
Website:
Facebook: Facebook Page
Twitter: @clairewineland
Claire's Place Foundation, Inc.
Melissa Nordquist
Project Leader:
Melissa Nordquist
Redondo Beach, CA United States

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