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
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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
A Case for Support
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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.
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
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
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.
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/
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
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.
About Connor
Hi, my name is Connor… and I like playing soccer, riding on my dad’s motorcycle and eating chocolate. When I was 8 months old I was diagnosed with Cystic Fibrosis, a genetic disease affecting approximately 30,000 children and adults in the United States.
My Birthday is coming up and we are going to my Gym to have a swimming party with my classmates and friends. One of my favorite things to do is to go swimming.
Team Connor
Team Connor is an organization of friends dedicated to helping in the fight against Cystic Fibrosis. We work in support of the Cystic Fibrosis Foundation.
We channel our energy into a number of different fundraising efforts to raise money for the Cystic Fibrosis Foundation of Arizona including the organization of a big contingent of walkers for the annual Great Strides Walk in Phoenix, Arizona.