CF INFO


Cystic Fibrosis affects myself and 70,000 other people across the world who fight it every day. It's shortened the lives of thousands, including my amazing sister, Angela, who bravely lived with cystic fibrosis for 16 years. Please take a moment to read the info below and click on each these links so you can help each of these wonderful organizations and memorials.

What Is Cystic Fibrosis? ~ Taken from the Cystic Fibrosis Foundation website

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

People with CF can have a variety of symptoms, including:
  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements.
Statistics
  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the mid-30s.

My Cystic Fibrosis Awareness Video



My Blog Universe

Go to the tab on right side of my site to read all of the blogs that I read, many of which are CF-related. They cover all the bases: CFers from teens to veterans, CF Parents, transplant recipients, and more!  You'll know which ones are CF focused because they are very upfront about EVERYTHING! :-)

Boomer Esiason Foundation



The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and the quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.

 http://www.esiason.org



The Blooming Rose Foundation

Created by CF parent Kat East, BRF gives hope to families immediately following diagnosis, fund raises to positively reach a vast array of individuals and offer an online resource for individuals, families, and friends to find up to date research, links to encouraging websites and blogs as well as a way to connect with other families and adults with CF. Blooming Rose Foundation will talk with families about raising a child who is thriving with CF; the positive outlook and breakthrough treatment available now and on the horizon.

http://www.bloomingrosefoundation.org/ 


Breathe 4 Tomorrow Foundation

Founded by the awesome Sarah Morris, B4T is a designated 501(c)(3) non profit organization founded to “make life for those living with Cystic Fibrosis easier one breath at a time” by helping with the financial struggles families face when dealing with Cystic Fibrosis. With many assistance programs there is this “gap”. The “gap” consists of the people who make too much to be eligible for assistance, but not enough to make (ends meet), and have to struggle. It is very important to make sure that we take care of our CF community and do all we can to make sure they are getting the medications they need and that the additional financial costs are not something that is worried about. 

http://breathe4tomorrow.org/


Brian & Bobby Speak


Cystic Fibrosis patients Bobby Womack and Brian McTear were introduced to one another at their West Philly CF clinic and developed an instant camaraderie. They shared the triumphs, trials, and the tribulations that come from living with Cystic Fibrosis and eventually made their friendship public when they started this blog, writing letters back and forth to each other on it since 2005. Bobby unexpectedly passed away in the summer of 2009. I only knew him through his writing, but the reality of the situation took my breath away. Bobby and Brian's letters provided a doorway for others to walk through and learn from. Talk of medications and daily routines wove seamlessly into music and family events. Their blog was and is real life at its core. We are lucky to have the opportunity to read Brian & Bobby Speak.

http://www.brianandbobbyspeak.com/ 


Cystic Fibrosis Foundation


The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
 http://www.cff.org/
  


CFVoice.com

An online community for people of all ages living with cystic fibrosis. A place for motivation, inspiration and connection to the cystic fibrosis community. They were the creators of the "Breathe Song Event" that featured myself, and my CF compadres Rose and Tess.

http://www.cfvoice.com/index.jsp

http://www.cfvoice.com/info/breathe/index.jsp

CF 2 Chat

Our mission is to enhance the lives of those living with and affected by Cystic Fibrosis. We are here to help foster new relationships, build strong informational networks and encourage the exchange of both positive and difficult life experiences. At CF2Chat.com, we learn, share and connect as a CF community!


http://www.cf2chat.com/

CysticLife

This social networking site is dedicated to anyone whose lives have ever been touched by Cystic Fibrosis. Their mission is to make Cystic Fibrosis personal for those not personally affected by it and to make an immediate impact in the lives of the CF community.

http://www.cysticlife.org/


Donate Life

Organ and tissue transplants offer patients a new chance at healthy, productive, normal lives and return them to their families, friends and communities. You have the power to change someone's world by being a donor. It's about living.  It's about Life. Sign up to be an organ donor at Donate Life.

 http://www.donatelife.net/ 
 

Matt Scales Music Fund

Matt Scales had a talent for writing lyrics and songs; he had a way of making people laugh, gave his attention to all those he met and made a huge impact on the many who adored him. What many people didn’t know was that Matt had Cystic Fibrosis and sadly Matt died in April 2007, after a three month battle with an infection caused by the disease.

The Matt Scales Music Fund has been set up in his memory by his family and friends to continue Matt's musical legacy and give back to one of his life-long passions. This fund will provide rehearsal space and studio recording time for young bands who would otherwise struggle to fulfill their potential.

http://www.mattscalesmusicfund.co.uk/matt-scales-music-fund.htm

http://www.youtube.com/user/MattScalesMusicFund


The Rock CF Foundation

 A 501(c)3 nonprofit corporation. Founded and led by Emily Schaller, the Rock CF Foundation is dedicated to increasing the quality of life for people with Cystic Fibrosis. With the help of a core group of volunteers, the Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis.

                                                        http://www.letsrockcf.org/


Thanks again for your support!

Love,

Josh

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