JazzysMom reaches 14,000+ messages!

Congratulations to our Support Champion, Melissa (JazzysMom), who recently reached her 14,000 messages mark!

Each message has made a difference, whether greeting a newly diagnosed patient or caregiver, raising Jazzy with the help of thousands, or getting ready for a cross country move, Mel has left no corner of CyticFibrosis.com unturned since 1997! Not all her messages are even saved... only those since 2003!

She stirs our memories with her Monday and Tuesday blog entries.

You can meet her in CHAT at 8:00 EST most evenings.

She is always the busy bee (her name even means honey bee!), leaving all of us with more than 14,000 messages of support and tender advisement and lots of HUGS!

BeatifulSoul interning at CysticFibrosis.com

We welcome BeautifulSoul (Amber) as our new summer, virtual Intern!

Watch for encouraging messages to our young people. Amber will be using her talents with the Servers E-Flash, chat and I’m sure she will have fun projects for the young children of our Care Giver members. Amber shares her Mother’s Day e-video.

Thanks for reminding us, as parents, Amber, how our children bless and support us every day! Congratulations on graduating from High School.

Julie takes on the paperwork challenge!

As many of us know, Julie Raysbrook is a natural at filling out paperwork, following all the chores that seem almost insurmountable to most of us. 

A note from Julie about her 501 (c)(3)...

"After struggling for over 27 months with Mark’s Social Security Disability claim and paying 25% of the back pay to a lawyer who did nothing more than say 2 sentences at the hearing, I decided something needed to be done about where people with CF turned for advice regarding Disability with the Social Security Administration.

The services to others began back in 2004, helping members of CysticFibrosis.com fill out paperwork. The non-profit organization, Disability Advocates For Cystic Fibrosis (DAFCF) was recently founded in July of 2008.  The purpose of creating a non-profit was to be able to have the ability to do as much “advertising” in the CF community as possible.  Without a formal name and business credentials, this really wasn’t possible.

From 2004 to date, we have zero losses and 16 cases won.  This includes both assistance at the initial application time, and/or assistance in appealing a denial.  All the services we provide are 100% cost free to our clients, and references are available upon request.

Our services include help filling out the initial application, gathering a copy of your medical records at no cost to you, filling out paperwork to file an appeal, creating logs that may include infections, IV and nebulized antibiotic use, hospitalizations, and anything else that might come up along the way."  

The DAFCF.org was designed and executed with help from the administration and members of CysticFibrosis.com.

The CFMinute

Along with entertaining us with her super personality, Emily will use her one minute videos as educational opportunities. We'll laugh and smile, sing and dance along with Emily's daily routines including workouts, CF treatment regimes and of course lots of music. Emily will lead us on her 2000 mile bike ride, in August, to the Ellen Show, taking us with her across the USA, her helmet holding a secret webcam! Look for her videos on the Forums Pages of CysticFibrosis.com. This all begins June 1st!

Get Emily on Ellen!

Emily Schaller (LetsRockCFem) is an amazing 27 year old from Detroit, MI who has been living with CF her whole life. She also happens to be a fundraiser, athlete, drummer, jokester and unofficial Ellen look-alike. Emily has been hoping to get on Ellen to spread the word about Cystic Fibrosis for years!

Click here to help Emily follow her dream.

Why Join CysticFibrosis.com?

Being a member of the CysticFibrosis.com community offers an abundance of opportunities for CF patients and caregivers. We moderate our site 24/7 to provide you with a comfortable space to listen and to be heard, to share your stories, and connect with others for advice and support. CysticFibrosis.com is a place to gather information and become more educated about CF. We remember and honor those who have passed, and strengthen those who are suffering.

By connecting you to individuals with similar health regimes, diagnoses, and people who are going through the same experiences you are, we feel together, we can make a difference.

Based on your feedback, we are currently working with leading physicians, pharmaceuticals, biotechs and research foundations to help deliver more of the information and tools you’ve asked for. The relationships we are developing with our sponsors are becoming stronger each day. Ask your questions and let them know your concerns – they are listening.

Become a member today! ◊

The BEF creates Club CF: an inspiration for all adults with CF.

Club CF shows how people w/CF in different age groups (20+, 30+, 40+, 50+, 60+, and their Caregivers) are succeeding. Through Club CF, people can give hope and inspiration to those who are hesitant or nervous about what lies ahead of them.

People with CF are succeeding and making a difference in the world in high school, college, sports, careers, relationships, starting a family, post transplant, and disability.

If you are one of the many LIVING BREATHING SUCCEEDING Join Club CF and show the world what you have done!