Browsing Category

Blog & Events

Blog & Events, Press

May is National Cystic Fibrosis Awareness Month: Share A Story & The Facts

May 5, 2017

Laura McHolm, Contributor NorthStar Moving Company Co-Founder

May is National Cystic Fibrosis Awareness Month: Share A Story & The Facts

05/04/2017 02:45 pm ET

How can you help? Use your voice and get involved. Participate in walks and other events to support CF and share the facts on social media and elsewhere. There is a great foundation working to find a cure: the Cystic Fibrosis Foundation as well as, a foundation that supports children and families living with CF: Claire’s Place Foundation. Get involved. Donate. Come to their events.

PopSugar

 

Claire’s Place Foundation, founded by Claire Wineland when she was just 14 years old, is a 501c3 non-profit organization designed to help children and families affected by cystic fibrosis. Claire and was born with CF. In her short life, Claire has undergone more than 20 surgeries and has spent months at a time in the hospital. She survived months in a coma on mechanical ventilation despite the odds and was also a Make-a-Wish recipient. She has 40% of ideal lung function and the doctors have estimated two years left to live. This is not, however, what characterizes or defines her. Claire has dedicated her life work to making a difference in the lives of others living with CF.

Now 20 years old, Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy. She wants to live with intention and purpose. In her own words, “I know my life will be shorter so every day has meaning.” She strives to find new ways to help the CF community and other children afflicted with chronic illness. Claire’s Place is making a huge impact through its two programs – The Extended Hospital Stay Fund and the Family Support Program. These programs are in high demand and the foundation needs your donations to continue assisting young patients in need. You can meet Claire and support her foundation at her next fundraiser, “Glow Ride,” in September in Hermosa Beach, CA.

To find others ways you can help bring awareness to CF find a local chapter near you. In May and through out the year, let’s share Claire’s story to help find a cure!

Blog & Events, Families we have assisted

Meet Joshua ~ Extended Hospital Stay Grant Recipient

May 1, 2017

Joshua, age 11, was not diagnosed with cystic fibrosis until the age of 10.  Occasionally, patients present with all the symptoms but the underlying cause is over looked.  Thank Goodness this family found a doctor who decided to look a little deeper and try to find the cause of his recurring infections and failure to thrive.

A diagnosis such as this can be at first comforting to know that the disease causing negative and recurring issues has a name and a specific treatment plan but at the same time, it can be devastating to learn that cystic fibrosis is incurable and often times fatal.

Joshua experienced his first 2 extended hospital stays due to Pearson Pic 2 cystic fibrosis in the last few months.  This upheaval in a family can be expensive and stressful to say the least.  The social worker at their new CF Center referred them to us as potential candidates for an Extended Hospital Stay Grant and we were grateful to be able to offer them much needed assistance in catching up on missed payments and expenses incurred while caring for Joshua.

The family is home together again, learning as much as they can about raising a child with cystic fibrosis and the daily regimen involved.  Our hearts are with you and if you need anyone to help you navigate the path, please reach out to us about our Support Families Network.

“Claire’s Place has helped our family climb out from debt that had accumulated from loss of pay due to a long hospitalization for our son. We were already living paycheck to paycheck so any loss of pay has a huge detrimental effect on our family. We are still playing catch up with all the medical expenses too, seems like an impossible feat.  We cannot thank you enough for the help!”  ~ Joshua’s Parents

*This grant was made possible by our friend Riki Rachtman and his famous #RikisRide17.  He is raising money for Claire’s Place Foundation by riding his motorcycle across 48 states beginning June 1, 2017.  Be sure to visit his fundraising page today and find out more about this exciting event.  Thank you to Riki and all the people who are supporting his efforts!  YOU are making a real difference in this child’s life. (Rikis Ride 17 is sponsored in part by DeathWish Coffee)

Pearson Pic 3

Blog & Events, Daily Life

Need Help Applying for Social Security Disability Benefits?

April 26, 2017

disability-benefits-help

Our friends at Disability Benefits Help recently sent us a very helpful article so that our supporters know where to turn when the time comes to apply for Social Security Disability benefits.  Most of us know that it can be a complicated system to maneuver and we have found it very helpful to speak with an informed professional regarding our particular case.

Be sure to take advantage of this program established to aid persons with disabilities.  Find out today if you or your child qualifies.

How to Qualify for Disability Benefits with Cystic Fibrosis

Cystic fibrosis (or CF) is a rare, inherited disorder that results in mucus build-up in the lungs and digestive system. Living with “CF” can be difficult, especially as a growing child or an adult finding it hard to continue working. However, for those affected by a severe diagnosis, Social Security disability benefits may be able to help. If you or a loved one has CF, continue reading below to learn the medical requirements of disability benefits and the potential programs that may be available to you.
Medical Requirements

Qualifying medically for disability benefits starts with the “Blue Book”. This book contains all Social Security-approved disorders, as well as the severity necessary in order for an applicant to be eligible. When the Social Security Administration (SSA) looks over your application, they begin by comparing your diagnosis to its entry in the Blue Book. To determine if you may qualify, we must look to the Blue Book’s description of cystic fibrosis. CF’s entry can be found under Section 3 of the Blue Book: “Respiratory Disorders”. While it may look long and intimidating, this only means that people with CF have a variety of ways they can qualify medically for benefits. These include:

•Receiving a low enough score on an FEV test. FEV tests (forced expiratory volume tests) measure your ability to exhale properly. Depending on height, age, and sex, people need to be capable of expelling with a certain amount of force in order to pass the test. Those with low enough numbers qualify as disabled and are eligible for benefits.

•Symptoms requiring multiple hospitalizations. Most people with multiple CF-related hospital visits (more than three within a 12-month period, each at least one month apart) are medically eligible for disability benefits.

•Lung collapse requiring chest tube placement. Referred to in the Blue Book as “Spontaneous pneumothorax secondary to CF” (meaning lung collapse caused by CF). Those who require a chest tube due to this condition will qualify medically for benefits.

•Respiratory failure. Any person whose CF requires invasive mechanical ventilation, ventilation with a BiPAP, or a combination with both for at least 48 hours is considered at-risk for further severe lung trouble, qualifying them for benefits.

•Pulmonary hemorrhage requiring vascular embolization to control the bleeding. Those who experience internal bleeding in the lung (pulmonary hemorrhage) and require invasive tools to block off the affected blood vessels in the lung (vascular embolization) are medically eligible for benefits.

•Having low enough levels of SpO2. Those who receive a low enough score twice on a pulse oximetry test to measure the percentage of oxygen in their blood (SpO2) are medically eligible for benefits.

•Two of the following complications within a 12-month period: 10 consecutive days of necessary IV antibiotics; pulmonary hemorrhage requiring hospitalization; weight loss that requires daily supplemental nutrition via a gastronomy tube for at least 90 days; Cystic fibrosis-related diabetes (CFRD) requiring daily insulin therapy for at least 90 days.

If you are unsure whether or not you qualify medically for benefits, it is best to speak to your physician to analyze your case and compare it to the Blue Book’s entry.
SSDI and SSI

If you are medically qualified for benefits, then the next step is to determine which Social Security program may be best suited for you. While most applicants typically qualify for only one program, some are eligible for both.

Social Security disability insurance (SSDI) is for people 18 or older with a history of working and paying taxes. To qualify, applicants must have enough “credits” to their name, which are automatically earned up to four times a year by working taxable jobs in the United States. The older an applicant is, the more credits they require to be eligible for benefits. For example, while a 24-year-old needs only 6 credits (1.5 years of work) to qualify, a 46-year-old requires 24 credits (6 years of work).

Supplemental Security Income (SSI) is for people under 18, without prior work experience, or with particularly low income. Instead of a credit system, applicants are eligible if they are considered too low-income to support themselves independently. Applicants must make under $735 to qualify, though some forms of income (half of earned income made from work, SNAP benefits, etc.) are not counted. Applicants under 18 are evaluated using their parents’ income instead. Income charts for all SSI applicants can be referenced on the SSA’s main website.
Starting the Application
SSDI applications are available online on the SSA’s website. The website also contains helpful information, such as lists of necessary paperwork and FAQs. You can also call your local Social Security office for help on your application, or to make an appointment to fill it out in person.

SSI applications are currently only available in person. However, to prep important information prior to your application appointment, the Online Application for Disability Benefits can be filled out on the SSA’s website. Applicants under 18 also require additional paperwork (found online) to gauge eligibility and give consent for doctors to forward necessary paperwork.
This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disabilitybenefits-help.org or by contacting them at help@ssd-help.org.

Blog & Events, Families we have assisted

Meet Jackson ~ Extended Hospital Stay Grant Recipient

April 7, 2017

Wimmer Photo2Jackson’s family came to us shortly after a second extended hospital stay in great need of assistance. He is one of 3 children in the family and the only one with cystic fibrosis.  This year has been a particularly rough year for the family as they recently lost a parent after a long battle with cancer.  Jackson’s mother works full time but was in her new job less than a year when Jackson suffered his second hospital stay therefore she was not eligible for FMLA/paid family leave.

The social worker at their hospital reached out to Claire’s Place Foundation in the hopes of helping this family keep their home, which was in threat of foreclosure.

We were thrilled and grateful to be able to provide assistance so that the family could rest at ease and take a minute to get caught up on their mortgage and other bills that were also piling up. This was only possible due to recent help from our supporters in the form of a “Wedding Shower Donation“.  Thank you to Kathie and Paul DPhoto1avid who worked so diligently fundraising for this important program.

“Claire’s Place Foundation has helped our family by not being put out on the street.  They saved us from the heartache, stress, constant worry and feelings of worthlessness.  We will be able to remain as a family unit in our home that was facing foreclosure proceedings. This is something that we will be eternally grateful for, for the rest of our lives.” ~ Jackson’s Mother

Even with all the hard work it takes for this family to stay afloat, the social worker let me know that Jackson’s mother is the first person to put her hand out to newly diagnosed families at their cystic fibrosis center and has volunteered many times with projects to improve the overall care of the kids in their community.

Our hat is off to you, many blessings to you and your family ~

*If you are interested in hosting a fundraiser for Claire’s Place Foundation through our Crowdrise site, please let us know by sending an email to Melissa@clairesplacefoundation.org

Blog & Events, Families we have assisted

Meet Isis ~ Extended Hospital Stay Grant Recipient

January 26, 2017

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 isis-photobelieve 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!

Please consider becoming a monthly donor or making a one time donation to our Extended Hospital Stay Grant Program here