Team Connor

Christmas Break 2010

theteam — Wed, 22 Dec 2010 03:12:06 +0000

I cant wait for christmas day. I already recieved a webkin from my little brother, Carson. Today we put up all of the christmas cards that we recieved up on the wall. I am looking forward to Santa coming to my house.

Merry Christmas to everyone that helped with Great Strides, looking forward to seeing you in 2011

Progress of 2010

theteam — Tue, 21 Dec 2010 19:52:44 +0000

The CF Foundation is achieving unprecedented progress. Today we have more than 30 potential new therapies in our drug discovery & development pipeline, including four drugs in late-stage clinical trials that aim to treat the basic defect of the disease. Any one of these could have a profound and lasting impact on those living with cystic Fibrosis.

A highlight achievement this year was the successful development and release of the drug Cayston. A much-needed antibiotic alternative for CF patients who battle recurrent lung infections, Cayston is already being used by more than 4,000 people.

Because of these-and many more achievements in our efforts to cure and control CF-children and adults with CF are living longer, healthier lives.

None of this would be possible without your support, and I am deeply grateful for and humbled by your generosity.

“ So often we get caught up in our personal fight that we forget how many people are out there supporting us and making success a reality every day.” – CF Spouse

“Word fail me as I attempt to express my gratitude to those who stand shoulder-to-shoulder with me in fighting for this cause.”- CF mom

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

theteam — Wed, 19 May 2010 15:54:03 +0000

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

theteam — Mon, 29 Mar 2010 22:37:46 +0000

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

theteam — Thu, 25 Mar 2010 21:14:39 +0000

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

My Birthday

theteam — Wed, 17 Mar 2010 17:36:13 +0000

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

theteam — Tue, 09 Mar 2010 20:31:56 +0000

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

theteam — Thu, 04 Mar 2010 18:20:36 +0000

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.

New Antibotic for CF

theteam — Fri, 26 Feb 2010 00:54:06 +0000

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

theteam — Sun, 31 Jan 2010 17:19:36 +0000

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/