Because you asked...

So many of you commented on my note looking for people to join my Cystic Fibrosis Great Strides Walk 2009 team - stating that you were too far to join the team but wanted to make a donation. With my personal goal set to $3,000, here it is!

To make a tax-deductible donation, visit http://www.cff.org/Great_Strides/ShannonSteffen5260 and use the "Click to Donate" button on the top of the page.

Remember, this is for my wonderful husband Greg, his angel sister Diana, his two younger cousins with CF and the 30,000+ other children and young adults with this disease. With the average life expectancy of 37 years old, your donation will help us to raise the bar!

God Bless and many, many thanks!

Shannon
"CF Fighters" Team Leader

Join us at the Milwaukee Zoo May 17th!!

It's that time of year again for our annual Great Strides walk to Cure Cystic Fibrosis (CF) event and we need walkers. Not only do you raise money for a great cause but you have a chance at earning some great prizes, get free food and a day free at the Milwaukee Zoo!

For more information and to sign up today, visit http://www.cff.org/Great_Strides/ShannonSteffen5260

Remember, this is for my husband Greg, his angel sister Diana, his two younger cousins with CF and the 30,000+ other children and young adults with this disease. With the average life expectancy of 37 years old, let's do our part to raise the bar!

God Bless!

Cystic Fibrosis Ribbon Hope

New Design:
Cystic Fibrosis Ribbon Hope

Purchase this design and more Cystic Fibrosis Awareness T-Shirts & Gifts on t-shirts, mugs, oval euro stickers, bumper stickers, bags, magnets, and more Angel Cove today and be sure to use coupon code SUITEDNICKEL for $5 off your purchase of $50 or more no through September 11th, 2008!

CFF: Great News!

The Cystic Fibrosis Foundation has just released some great news:

1. The Senate officially recognized May 2008 as National Cystic Fibrosis Awareness month.

2. Congress passed the Genetic Information Nondiscrimination Act (GINA) today. This law makes it illegal for employers and insurance companies to discriminate based on genetic information.

3. President Bush signed into law the Newborn Screening Saves Lives Act, which provides resources and funding for new and existing newborn screening programs through 2012.

4. The House of Representatives reauthorized the Small Business Innovation Research (SBIR) program. This program awards grants to small biotechnology companies that conduct important CF research.

Each of these initiatives has tremendous potential to help people with CF. These bills help increase awareness of cystic fibrosis, focus research funding on CF, and establish critical legal protections to help people with the disease live longer, healthier lives.

Help us Help Others!

Normally I would ask if you would like to be on our Great Strides Walk to Cure Cystic Fibrosis team but given you are so far away, it is a difficult thing to ask. So, instead, I am asking that you help support our cause.

As you probably already know, my husband Greg was born with a terminal illness called Cystic Fibrosis. Today he is alive because of a miracle double lung transplant. Does that mean we are going to stop fighting to cure Cystic Fibrosis? Heck no! Why should we? Sure, Greg has new lungs but he still has the other complications caused by the disease. On top of that, Greg's two younger cousins also have this disease and if we don't find a cure soon, they will have no choice but to undergo a double lung transplant as well.

So, we need your help to raise funds to find a cure for Cystic Fibrosis. Right now the median life expectancy is around 34 years old; way too young to die! Why not help us to help them find a cure and have the ability to live a long and healthy life?

Making a tax-deductible donation is easy and secure! Just click on the link below to make a donation to my fund-raising page where your donation will be credited to my team. It is a one time donation for me to walk 6.2k (10 miles) to support this cause. Any amount you can donate is greatly appreciated!

Donating to GREAT STRIDES is such a simple and effective way for you to show your support for this important cause. Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation!

My CF Great Strides fundraising page: http://www.cff.org/Great_Strides/ShannonSteffen5260

Semi-Happy Thanksgiving!

For those that already know me, the week of Thanksgiving is not something that settles well with my stomach. It is this time of year that people are remembering what they are thankful for and getting geared up for the winter holiday season. For me, it is quite different.

It was this day a few years ago that I came home from work to find my husband unable to move or even get to the bathroom without being in great pain. The following day he was to see his Cystic Fibrosis doctor for a regular appointment and didn't see the need on seeking immediate medical help. Luckily for him, I knew medical attention was needed because the doctors told me shortly afterward that if we would have waited an extra day, he would have been dead. It was pneumonia and it was bad. So bad that he was put on a ventilator the night going into Thanksgiving day and I got to spend that "thankful" day in the MICU ward at our local hospital watching my husband fight to live.

After 4.5 weeks, he was transferred to the transplant hospital 2 hours away to be reviewed for a kidney transplant as well as a double lung transplant. Lucky for us, he was already on the transplant list for new lungs but his kidneys were now failing and they needed to assess if he was to receive both lungs and kidney from his hero donor down the line. He was placed on the list for both and after another 4.5 weeks of being in that hospital, I was able to get him home; ventilator, medical equipment and all!

For 9 months total he was on a ventilator and after a positive sleep study, they removed the ventilator and he was back to 4L of O2 by nasal cannula.

Although everything turned out fine in the end, and my husband has now been 3 years post transplant without any rejection, Thanksgiving was such a traumatic event that year that it still stays with me. I am truly thankful for my husband's life, thankful to his donor and family, and thankful to God. The trauma of that time will stay with me for some time to come and it seems that although the butterflies in my stomach are lessening in number, they still remain. Hopefully one day I can truly celebrate Thanksgiving fully and go to Thanksgiving dinner at our family's house without those butterflies tagging along.

5-year-old receives double lung transplant

A 5-year-old British girl who is the youngest person to ever receive a double lung transplant is flourishing nine months after the operation. Suffering from cystic fibrosis since she was only three months old, Mariam Imran's health had been deteriorating until her record-setting surgery at London's Great Ormond Street Hospital, The Daily Mail said Wednesday. Now her parents, who were once told their daughter had only months to live, are happy to watch Mariam play just like any other child. (Science Daily, 9/12/07)

The miracle of life is never out of one's reach and this story just goes to prove once again how even the smallest of God's creatures can realize the gift of life; even when it has never been done before! This girl was born with Cystic Fibrosis, a disease that our family has been working towards a cure for decades now and to hear that a small 5-year old has been blessed with a second chance at life makes our hearts sing.

Please keep this young girl in your prayers as well as the donor family. May she be blessed with all the health and happiness this world has to offer!

May is National CF Awareness Month

May is National Cystic Fibrosis Awareness Month...

...and CF awareness starts with YOU The CF Foundation needs your help to educate your elected officials about cystic fibrosis in just a few simple steps—let them know how they can help us add tomorrows every day.

The Congressional Cystic Fibrosis Caucus, co-chaired by Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL), is sponsoring a Congressional resolution recognizing May as National Cystic Fibrosis Awareness Month. Click here to read Reps. Markey and Stearns letter to House members.

TELL your story and ASK your Congress member to support the CF Awareness Resolution. Click here to read the resolution.

Three Action Steps to Tell the Story of CF:

Write, e-mail or telephone your representative asking that he/she co-sponsor House Concurrent Resolution 85 (H. Con. Res. 85) recognizing May 2007 as National Cystic Fibrosis Awareness Month. Here’s how:

1. Identify Your Representative
   To learn who represents you in Congress, go to www.house.gov.
2. Contact Your Representative in DC or at Home.
   First, click here to see if your representative is a member of the CF Caucus.
   By E-mailUse a sample letter to ask your member to support Cystic Fibrosis Awareness Month. Be sure to add your personal story about CF.
   Use this letter if your representative IS a member of the CF caucus.Use this letter if your representative IS NOT a member of the CF caucus.Use this letter if your representative is Ed Markey or Cliff Stearns, the co-chairs of the Congressional CF Caucus.
   By TelephoneUse this suggested phone script to call your representative's office.
3. Keep Us Posted
   Please let the Public Policy Department know what action you have taken. This step is vital in producing a successful advocacy campaign. Simply fill out and e-mail us this short form so we can document your communications.
   

For further information, call the CF Foundation Public Policy Department at 1-800-FIGHT CF (344-4823)

Crossposted from: http://www.cff.org/GetInvolved/Advocate/index.cfm