May
19
2010

CF Foundation to Brief U.S. Senate on Rare Disease Research

Dear Advocate:

CF Foundation Announces Congressional Briefing

 

We are delighted to announce that Dr. Robert J. Beall, president and CEO of the CF Foundation and Dr. Francis S. Collins, director of the National Institutes of Health (NIH) will brief the United States Senate on the ongoing efforts to develop promising medical research for rare diseases this Thursday, May 20.

 

Call your senators today and urge them to attend this exciting event! The briefing will discuss how funding for medical research at NIH can be used to more quickly create new therapies for patients and save lives. The NIH is the primary federal agency for conducting and supporting medical research. Speakers will also discuss the lessons learned from the cystic fibrosis community’s successes in medical research that can map the way for other diseases.

Dr. Collins, a distinguished geneticist who led the international effort to map the human genome, is the co-discoverer of the cystic fibrosis gene.

 


Listen to Dr. Collins talk about his dream for cystic fibrosis.
 

Did you know that May is Cystic Fibrosis Awareness Month?

May is Cystic Fibrosis Awareness Month. You can help keep your members of Congress informed about the needs of people with cystic fibrosis by urging them to attend the Foundation’s congressional briefing on Thursday, May 20.

Thank you for your support!

Mary B. Dwight
Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org
 

MAKE AN IMPACT ON CF

SPEAK OUT
Get Started

GET INVOLVED
Sign up

INSPIRE ACTION
Recruit friends and family

————————-
To learn more about the Cystic Fibrosis Foundation, visit www.cff.org.

Connect to the Cystic Fibrosis Foundation on:   

Join the CF Foundation on Facebook!  Facebook           Follow the CF Foundation on Twitter! Twitter

To unsubscribe, please send an e-mail to publicpolicy@cff.org from the address you would like removed.

Read our privacy policy.

Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20814 


Mar
29
2010

Clinical Trials

Dear Advocate:

In the last few weeks, there have been several important developments both in health care legislation and in CF Advocacy. See what’s new and learn how you can get in on the action!

 

Legislative Update

New Health Reform Bill Includes Provisions that Impact People with CF

On Tuesday, March 23rd, President Obama signed into law a health reform bill that includes provisions that impact people with cystic fibrosis (CF).

While the Foundation has not taken a position on any particular health reform bill, we have strongly encouraged officials to include specific reforms that are important for the treatment of CF.

Learn about provisions in the bill that benefit people with CF.

Clinical Trials Bill Not Included in Health Reform — Campaign to Pass Bill Continues

 

The Improving Access to Clinical Trials Act of 2009, which would allow people with CF who are on public benefits to participate in important research without losing their health coverage, was not included in the health reform bill that President Obama passed earlier this week. Your efforts to get support for this bill in Congress are more critical than ever! We will pursue passage of the legislation as a stand alone bill.

 

Help continue the momentum that has already brought an extraordinary 116 co-sponsors onto the House version of the bill:

 

Ask my members to pass the clinical trials bill in 2010!

 

Grassroots Update

CF Advocates March on Washington to Advance Foundation Agenda

On Thursday, March 11th, 35 CF Advocates from across the country met with members of Congress and Congressional staff as part of the Foundation’s annual March on the Hill event. CF Advocates shared their personal stories and asked legislators to support the Foundation’s public policy agenda. As a result, 5 new Representatives in the House signed on in support of the Improving Access to Clinical Trials Act of 2009, and 2 new Representatives joined the Congressional Cystic Fibrosis Caucus, putting the new total at 150!

Did you know?

Looking for a great way to introduce your family, friends, neighbors, and coworkers to the Cystic Fibrosis Foundation? Invite them to participate in GREAT STRIDES — the Cystic Fibrosis Foundation’s largest national fundraising event. Every dollar raised is one step closer to a cure. Find a GREAT STRIDES walk near you and Register Today

 

 

Thank you for your support!

Mary B. Dwight
Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org


Mar
25
2010

A Case for Support

PRESS RELEASE
March 24, 2010

For Immediate Release
Contact:
Jay Simon
616-241-2100
Cystic Fibrosis Foundation

 

The Cystic Fibrosis Foundation is an organization like no other. When you support the Foundation, you can…

…make a difference in the lives of people with this disease today. Dramatic improvements in the length and quality of life for people with CF are the direct result of the Foundation’s investments in quality care and research. Today, the median predicted age of survival is 37+ years – more than double what it was 25 years ago.

…join the team that is making tremendous strides toward a cure and control for cystic fibrosis, a life-threatening genetic disease that affects 30,000 children and adults in the U.S. Each day, we are getting closer to finding a cure, but we need more people to support this effort to reach our goal.

…contribute to scientific advances that are making history. In 1989, Foundation-supported scientists discovered the cystic fibrosis gene — a monumental breakthrough on the road to a cure. The Foundation’s innovative approach to research has led to new investigational therapies that attack the disease at its core. If successful, these potential drugs could add decades of life for people with CF.

…feel good knowing you are backing a cause that truly needs your help. Cystic fibrosis is a rare disease. Although the Foundation is the primary sponsor of CF research, we receive no federal funding. The Foundation relies on the generosity of individual donors and corporations to fund its life-saving mission. We need your time, talent and support.

…rest assured your contributions will be used wisely. The Foundation has received a four-star rating for sound fiscal management from Charity Navigator, the largest independent charity evaluator in the United States, and is an accredited charity of the Better Business Bureau’s Wise Giving Alliance, meeting all of its Standards for Charitable Accountability. Nearly ninety cents of every dollar of Foundation revenue is invested in vital research, medical and education programs.

…become part of an organization that is making headlines. The Foundation has been recognized by Forbes, Business Week, USA Today and Newsweek for its innovative approach to research.

…help fund medical research that will not only benefit cystic fibrosis but could benefit those who suffer from a range of other diseases as well, including chronic sinusitis, inflammatory bowel disease, Duchene muscular dystrophy and spinal muscular atrophy.

…have an impact locally. The Foundation funds and accredits a nationwide network of 110 CF care centers, which provide vital resources and support to patients and families in your community.

Please join us and help make “CF” stand for “Cure Found.”

For more information, visit: www.cff.org


Mar
17
2010

My Birthday

Yesterday Connor truly made my birthday.  He helped me lay down flagstone in the morning, we played lego star wars for the wii and then for dinner he acted as a waiter, took my order and really impressed me with his spelling. 

We recently had a parent-teacher conference where he reviewed his work with us instead of the teacher and after meeting with Connor on what he excels at and what he needs to work on the teacher visited with us for a bit.  Of course he needs to work on his penmanship because already he can write better than his father.  He has a truly wonderful imagination, again DAD.  He should attend some type of program for the gifted during the summer….uhhh not Dad.  You feel proud when your child does something new for the first time and you see them grow into a small boy, young boy, etc., but when his teacher says that he is gifted in many areas you begin to tear up.


Mar
09
2010

The Cough

Here it is, a time where everyone has been asking me how Connor has been doing and for some time now he has been doing great, people around him get sick, but he stays strong and healthy.  Last night his mom got back from a trip to Michigan and he started coughing, he was coughing so much he ended up puking throughout the night.   He had to come talk to me a couple of times between 1-2am because there was a discrepancy of his description of how much his stomach hurt.  He had previously told me that his stomach hurt this much (extending his hands about 4inches apart) and then later on came in and said “dad you know when I said my stomach hurts THIS much, well it really hurts THIS much(now it was only about 2inches apart).  I walked him back to his room and stayed with him while he got sick and just like always he happily climbed back into bed and goes to sleep as if all of this is just regular for a six year old to do.  Well, the last time I put him to bed I told him to come get me if he felt sick again.  I forgot how literal kids are and so around 3am Connor came to my bedside, gently tapped me on the shoulder, I rolled over to look at him in the face, and then he puked all over me.  I rushed him to the bathroom so he could puke in the toilet and asked “buddy why didn’t you go to the toilet if you were going to get sick?” Connor replied “Cause you told me to come to get you instead”  There wasn’t much else I could do except laugh and know that he did exactly what I told him to do and that without the humor that I try to attack everything with the evening would be just too much to bare.  Connor is the strongest person I know, he battles his disease everyday with a wonderful attitude and when it gets bad it doesn’t even seem to phase him and occasionally his dad gets thrown up on.

To address this stomach issue and coughing we will be going back to the hypertonic salin solution that seemed to do wonders for Connor and then see how that works.  If we don’t see any progress then we will contact the doctors and see what their advice is to address the coughing.

Thank you all for your continued support


Mar
04
2010

CF bike Ride

This are moving along with the Cystic Fibrosis Bike Ride.  Our event date is November 13th in hopes that it will be a great route for training larger races/rides around this date in the valley.  The course is also very beginner friendly courses so if you are interested in helping to raise funds for CF and you like to ride keep an eye out for more news on the Cystic Fibrosis 65 roses bike ride coming in November 13th 2010.

Follow us on your rss feed at teamconnor.com/feeds


Feb
25
2010

New Antibotic for CF

CYSTIC FIBROSIS FOUNDATION WEST MICHIGAN

 

We are very excited to announce that late yesterday the U.S. Food and Drug Administration approved an important new inhaled antibiotic for the treatment of cystic fibrosis called Cayston (aztreonam for inhalation solution).

This is the first new inhaled antibiotic for CF in more than a decade, and the Foundation played an important role in bringing this new therapy to patients. This drug is another critical tool in the fight against recurrent lung infections in CF. Developed by Gilead, it will be available by the end of next week.

Cayston is the first CF drug to advance- from beginning to end- through the Cystic Fibrosis Foundation’s Therapeutics Development Program. We supported Cayston at each stage of development. The approval of this therapy demonstrates our drug development model is working.

In addition, our pharmacy will be one of only several Cayston distributors in the country.

Finally, a Cayston call center developed by Gilead and our pharmacy was launched today. The program will assist people with CF and members of their care team with insurance verification, co-pay assistance and claims support. For more information, go to www.cayston.com.

For more infomation about this story click here.


Jan
31
2010

Birthday

Today is the birthday party, well the 6th birthday party this week for his sixth birthday.  Connors mom loves to celebrate her birthday so she has passed it on to Connor.  We had a prebirthday celebration with bowling, a birthday party with friends on his birthday, a birthday party a school, a birthday party with a couple more friends and his grandma, a trip to the Monster truck rally with his buddy Anthony and now his big BIRTHDAY PARTY!! I think its excessive but Shanna celebrates her birthday during the entire month of October so this is actually a little reserved. 

Connor is doing great health wise and we are on a good track, unfortunately we lossed our favorite Doctor at Phoenix Childrens Hospital but I am sure they will find another great replacement for the CF team there.

Thank you again for your suppor and rememeber you can follow us by adding us to your feeds at www.teamconnor.com/feeds/


Jan
25
2010

Connors 6th Birthday

Last night we went bowling to celebrate connors birthday eve.  Yes birthday eve!  This is something his mother has created, in fact I wouldn’t be suprised if Connor pulls out the old “This is my birthday week, or This is my birthday Month”  as his mother does in October.  This morning Connor woke up and asked if I noticed anything different about him and I knew it must have something to do with being 6 rather than 5.  I answered “no” and he said ” I think I am a little bit bigger because I am six”  I agreed and we came to the conclusion that he grew about 4 inches over night.  Yes he is my son for sure and he is a proud little six year old.  He gets to celebrate his birthday 3 times this week, once today on his actual birthday with dad buying the latest in belt fed nerf gun and opening fire on him when he gets home from school.  He will have a new weapon as well, but it only holds 30!  Mine has a belt that I believe holds a 100 and has a tripod mount.  This is crazy but lately this is a family activity where we all get involved and shoot each other.  It is great fun.  Wednesday he celebrates his birthday at school and then this weekend at crackerjacks for put-put, arcade, pizza, & racing the cars around the track at 3 mph!!!  

Remember you can receive our feeds at www.teamconnor.com/feeds


Jan
15
2010

Today Connor is doing much better.  His lung function has dramatically improved and his coughing has all but stopped.  We continue to monitor his coughing because it is the first tell tail sign that he has a serious infection again, but this time it seems to be staying away. 

Last night Shanna asked about his breathing and why he was taking shallow breaths and he should us with his hands how much oxygen he had in his lungs illustrating that there was about 2 inches of oxygen in his lungs and this is why he was breathing that way.  In fact she heard the wizzy of air through Connor’s boogar encrusted nose and this is what was making the weazing sound she heard.

Connor is back at school and he missed 25 days the first half of the year so we are making it a goal change this, I tease him about girls, he talks nonstop about the wii, starwars and we play baseball so right now he just your normal 5yr old.