Welcome to The Servers Newsletter! This issue focuses on our most recent survey results and reveals that more education is needed among the CF community regarding products and what they are used for. In addition to developing new educational sections for CysticFibrosis.com, we’re also working towards becoming a more secure and private online community. Our mission continues to focus on empowering the patient!

Sincerely,

Jeanne Barnett, Founder
CysticFibrosis.com

The results of the Brand Awareness Survey was a success with 637 community members answering the survey in less than 5 days. Our overall findings were intriguing. Results showed that although many people are familiar with some products, many have not been successfully informed about their functions or the benefits of proper compliance or adherence. This highlights the need for additional education regarding those products and what they are used for. In an effort to empower the community, CysticFibrosis.com is taking what we learned from these results and have begun discussions with notable healthcare industry leaders and practitioners on how they might be able to help reach the needs and better inform our community.

To see additional analysis from the survey please click here.

If you have any questions or would like more information regarding our research efforts, please contact us at research@cysticfibrosis.com.

CysticFibrosis.com Launches Member Health Network

Our CF community asked for a special, customized web space to share their personal web sites. These sites contain personal information, knowledge, and inspiration pertaining to relevant CF issues and topics. The topics currently range from Transplantation, Nutrition, Male Infertility, Foundations and Fundraisers, CF Education and Hope.

The importance of connecting to the community to share your knowledge and first hand experiences with other CF members going through similar experiences is vital. The benefits of the Member Health Network are boundless. Share, express and inspire each other.

CysticFibrosis.com is dedicated to developing interactive, community centric, and professional tools. Our business is connecting your passion, energy and dedication so that the community learns from you. Together, we empower.

Join the Member Health Network today!
Submit your Website and URL here. ◊

A Breath of Fresh Air

Ambry Genetics teams up with the Newport Surf Club and raises CF awareness as well as spirits. Jamie O'Brien, Brad Ettinger and crew use surfing to help kids with Cystic Fibrosis. Read More >

Ambry Genetics, a CysticFibrosis.com interactive sponsor is a worldwide leader in specialized genetic testing.

Laps For CF

The Laps for CF™ Foundation is an organization based out of Birmingham, Alabama, that fights Cystic Fibrosis everyday. Together with CF Supporters across the United States, the Laps for CF™ Foundation raises money and awareness for Cystic Fibrosis. The money the foundation raises is given away to one of three main organizations. Read More>

It's official! The Laps for CF™ Foundation will be teaming up with the Boomer Esiason Foundation to combat Cystic Fibrosis. Swim-a-Thons will be set up at 15+ Universities across the nation. Visit www.esiason.org for more information. ◊

The Boomer Esiason Foundation
Scholarships of the Arts, Sciences, Athletics

The average lifespan of the CF patient is increasing. Have you been thinking about your future and the professional possibilities it holds? The BEF is changing young lives by offering academic, athletic and art scholarships. Take advantage and submit your applications today! For more information and applications go to: www.cfscholarships.com. ◊

Lung Transplant Grant Program

While the cost of transplantation is typically covered by most insurance companies, travel and relocation costs are typically absorbed by the patient’s families. The BEF Lung Transplant Grants Program is designed to help families cover the expenses that are not covered by their insurance.

Possible expenses to the recipient and family include, but are not limited to: patient and family transportation costs for evaluation, surgery, clinic visits after transplant; housing, food, and living expenses associated with relocation to the transplant site. Read More >

Baby Steps

Though Maryland gets high marks, critics say many states are moving too slowly in addressing genetic testing of newborns. -Dennis O'Brien | Sun Reporter | June 28, 2007

A drop of blood taken from Korinna Sieracki's heel a day after she was born last June at Franklin Square Hospital Center revealed what her mother feared. Read More>

The BEF and CF Research

The BEF is involved in several events each year to help raise money for Cystic Fibrosis research. Click on any of the events to learn more about what’s going on in the coming months. Visit here. ◊

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 that are going through the same experiences that you are, we feel that 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 them your questions and let them know your concerns – they want to hear from you!

Become a member today! ◊

CysticFibrosis.com 2.1 is Coming!

We’re growing exponentially. Our team is busy behind the scenes as well as on the front lines working quickly to expand our services to meet your needs. Six months ago, when we launched CysticFibrosis.com 2.0, we brought you the new face of the community. A fresher look, easier navigation, and fun new tools like CF Tube which gives the community more ways to express themselves and interact with more members.

Since then, another 1,600 members have joined us. We are happy to see them and hope we’ve been able to make a difference in their lives. In order to keep the “streets and neighborhoods” of the community safe, we’re currently working on CysticFibrosis.com 2.1. This release focuses on increasing privacy for the community and makes it easier for you to know who you are talking to. This doesn’t mean exposing your identity; we are actually beefing up our security measures. When members share experiences and grow closer together we feel it’s important for you to feel safe.

Fun stuff is also part of Release 2.1, easier ways to use community tools, quicker access to find what you’re looking for and a couple of other things we’ve got up our sleeves.

To ensure Release 2.1 meets the needs of the community, we’ll be contacting some members through surveys and interviews to gather your thoughts and concerns. If you have any burning issues or ideas that can’t wait, as always, please contact us at admin@cysticfibrosis.com ◊

Delivering Big Fun! "Random Act of Kindness" made possible by the BEF

1,000 Big Fun Boxes were delivered to hospitalized cystic fibrosis patients around the United States. The boxes were donated to children during extended hospital stays, providing them with games, activities, creative outlets and fun. With the support of the Boomer Esiason Foundation, The Big Fun Boxes were delivered to hospitals covering 10 states and 3,000 pediatric patients. Read more>

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