Cystic Fibrosis Foundation - Silly Bandz Fundraiser

CF Foundation has these really cute silly bandz they are selling on their website.  You should check them out!!  Would make great stocking stuffers!!  I just ordered mine!!!

http://www.cff.org/GetInvolved/LimitedCollectibles/limited_collectibles.cfm

Azactam

My son Brent was put on a new antibiotic called Azactam.  We believe he had a reaction to this new medicine which resulted in him being hospitalized.  They ran the Azactam with a steroid which Brent tolerated very well.  Seems to be helping as I do not hear him coughing as much.  Let's pray this one works for a while before he becomes resistant.

I don't understand why hospitals can't have better tasting food .... it all looks good, but is terrible and bland.  Every time my son gets put in the hospital he tends to lose weight unless I bring him outside food that he will eat.  Lord knows he can't afford to lose any more weight.

He is definitely happy to be home and we are looking forward to some new technology coming our way hopefully with regards to a new CPT device that works off sound waves.  Will keep you posted on that!!

Huge Thanks to Ambient Healthcare!!!!

Breathe Easy Foundation President Kevin Przybyl and the Foundation's Medical Director, Dr. Daniel Layish, accepting a donation of $1,000.00 from Ambient Healthcare Inc. from Pharmacy Account Manager, Susan Fendley. The donation comes from a fundraiser Ambient Healthcare held. Every cent of this donation will be going to helping patients with cystic fibrosis pay for the overwhelming costs from living with CF. Thank you Ambient Healthcare !!!!

Winter Park Memorial Hospital Remodel

Posted on behalf of the Breathe Easy Foundation ...

ATTENTION ALL ARTISITS (or atleast people with a creative bone in their body!): WE NEED ART!! Part of the remodel we are workin on at Winter Park Memorial Hospital includes bringing some art work into the rooms. We would love to collect art made by CF patients or their friends/family to include there. If you or someone... you know would like to donate some artwork for this project, please contact us! :)

Find us on Facebook - search for Breathe Easy Foundation!!

Kevin A. Przybyl Breathe Easy Foundation

I know it has been a while since I posted on here.  However I wanted to share that I am now a Director on the Board of Directors for the Breathe Easy Foundation.  This Foundation was founded by Kevin A. Przybyl who has CF.  He is an incredible young man who has first hand personal knowledge of the struggles of those with CF.  The purpose of this Foundation is to provide financial assistance to those with CF in need in the Central Florida area to help cover medical expenses such as co-pays, medicines, etc.

Adults with CF has a program called Abilities which performs this function at the present time, however due to some budget cuts with the Federal Government, this program ends in December 2010.  So Kevin formed this Foundation in the hopes of taking over where they are no longer able.

We NEED parents of CFers, CFers and anyone else who has the passion to help those afflicted by this disease to help us out with fund raising and spreading the word to companies who can make donations to this amazing cause!!

www.breathe-easy.org

There are so many ways to help ... one of the easiest ways you can contribute on an ongoing basis is to apply for the Breathe Easy Foundation Credit Card.  This is done in connection with Capital One Credit Cards and there are 3 styles of credit cards you can choose and apply for and with each purchase you make a percentage is donated back to the Foundation.

PLEASE SHOW YOUR SUPPORT FOR THIS AMAZING FOUNDATION!!!

Chick-fil-A Fundraising Event for Sunny Shores Sea Camp

Reminder about the June 10th event at the Maitland Chick-fil-A from 5 pm to 8 pm, will be hosting a Spirit Night in honor of Sunny Shores Sea Camp to raise money to be donated to this amazing organization.

I am responsible for getting special tickets out for people to attend this event to designate sales for this fundraiser. If you are interested in participating, please contact me at snydercd@earthlink.net.

MAY IS CYSTIC FIBROSIS AWARENESS MONTH

Please show your support and spread awareness about CF.

Great Strides Walk 2010 - Baldwin Park

We had a lot of fun at this event!  Our team raised over $1,300.00 and had over 10 walkers.  My son actually walked with us this year as well.  Here are some photos:

This is some of the students and staff from Keiser University

that walked as part of our team

This my son's Dr.'s Office Walk Team  :o)

Central Florida Paralegal Association - Walk Team

So incredibly sad ....

This is just another reason why we need to do whatever we can to raise money for research to cure this disease!! Please consider making a donation to my walk team for the Cystic Fibrosis Foundation's Great Strides Walk at www.cff.org/great_strides/cassiesnyder6344.

 Check out this incredible story about Eva Markvoort  - http://www.cnn.com/2010/HEALTH/04/27/blog.terminal.illness/index.html?hpt=C2 

 

(Courtesy of CNN) -- The former beauty queen stared into the camera, but this was no pageant or performance. She looked frail and thin, and her hair was rumpled. But Eva Markvoort smiled weakly.
"Hello to the world at large," she said in the video. "To my blog, to my friends, to everyone. I have some news today. It's kinda tough to hear, but I can say it with a smile." Propped in a hospital bed, Markvoort sat surrounded by her family. "My life is ending."
Markvoort had cystic fibrosis, an incurable disease that causes mucus to accumulate in the lungs. For nearly four years, she narrated an unvarnished blog about life with a terminal disease. Even when it appeared unlikely that she would receive a second double lung transplant, the 25-year-old continued to chronicle life on her blog.
The public sharing of one's last thoughts is a way to acknowledge that the end is near, but it also destigmatizes death for others, said medical experts who work with terminally ill patients.
In the Internet age, many people reflect on their lives through video, personal blogs and larger websites such as CaringBridge.org, where people who have major health events connect and share online.
"What we're seeing over the last decade, we are gradually moving from a culture that had become during the 20th century, very closed about death," said Dr. Chris Feudtner, research director of Palliative Care Services at the Children's Hospital of Philadelphia in Pennsylvania.
A cultural shift has occurred, he said, referring to columnists and Randy Pausch, a computer science professor at Carnegie Mellon University, who discussed their impending deaths with frankness. Pausch's last lecture, urging students to fearlessly pursue their dreams, went viral on YouTube in 2007, getting more than 11 million views.
Their line of thinking may be, "I'm still alive. I don't want to be closed. I want connection. I want to be able to share what I'm learning on this journey," Feudtner said.
Bloggers like Miles Levin, an 18-year-old who had a rare soft-tissue cancer and died in 2007, and Michelle Lynn Mayer, a 39-year-old mother who had scleroderma and died in 2008, shared their thoughts on living and dying, too.
"We all tend to be open via video, blog or Facebook about what we do every day. It's hardly surprising that openness extends to people's last days or weeks," said Dr. David Cassarett, author of the book "Last Acts," about end-of-life decisions.
These bloggers, Cassarett said, are helping the rest of us through largely uncharted territory. He used a sports analogy to explain.

"I've loved more than you could possibly think." Markvoort, center, with friends in her hospital room.

"Hardcore bicycle riders ride in packs, and there's a tradition," he said. "The one in the front points out hazards in the road to those who come behind. It's both an opportunity to be helpful, if you're in front. You spot sewer grates, so others can avoid accidents."
Blogs like Markvoort's could be acting similarly, he said. They don't shy away from the ugliness and brutality of the dying process.
"They're not just about hope but also about despair. That is, they're telling us not just what we want to hear but also what we need to hear," Cassarett wrote.
Markvoort started her blog in 2006 because hospitalized patients with cystic fibrosis were isolated because of infection. Alone in her hospital room at Vancouver General Hospital after visiting hours, she sought to connect with other patients by finding them online.
The blog's name 65_RedRoses, originated from her childhood inability to pronounce cystic fibrosis; she, as have many other children with the disease, called it "65 roses." Markvoort added the word red because it was her favorite color.
Markvoort was the subject of a Canadian documentary also called "65_RedRoses." It showed her harrowing experiences with the disease: violent coughing, vomiting, IVs, the painful procedures that made her scream.

Her dreams: "Stepping out of this room ... skipping down the street breathing free, free."

The documentary followed her as she waited for a double lung transplant and as she formed online friendships with two American girls who have cystic fibrosis. The film ends on a happy note: Markvoort got her lung transplant and appeared to be on the road to recovery.
But less than two years later, her body began rejecting the organs. Her lung capacity dwindled, and every breath became laborious.
Sometimes, her blog posts were raw, filled with "episodes of projectile vomiting, hours of gasping for breath, waves of nausea lulling out into hours of sleepiness."
"I'm drowning in the medications," she wrote. "I can't breathe."
Initially, Markvoort's mother, Janet Brine, said, her daughter's openness made her feel uncomfortable.
"We connect differently than your generation. I'm part of the digital world," Brine recalled her daughter telling her.
The constant theme in Markvoort's blog is love.
In a video entry where she talks about her impending death, Markvoort said: "I think I'm very lucky, because I've loved more than you could possibly think, could possibly imagine. So I'm celebrating that: celebrating my life."
Markvoort grew up in a suburb of Vancouver, Canada. Girly to the core, she dyed her hair red and loved outrageous fashion like pink boas, polka dot dresses and striped knee socks. She was crowned a beauty queen (of New Westminster, a suburb of Vancouver) and attended University of Victoria, hoping to become an actress.

"Hope resounds. I am not dying. I am living living living more each day." Markvoort is seen here with her sister, Annie.

But she couldn't pursue that career because of her unpredictable health.
"But she has found other ways to have that artistic outlet, and writing the blog is one of them," her mother said.
She championed cystic fibrosis awareness and organ donations. From Los Angeles to Poland, letters, stuffed animals and cards poured into her hospital room.
"I felt so selfish when I stumbled across your [LiveJournal] on here, because I've been smoking cigarettes for years, taking my lungs for granted. You helped me quit the worst habit I've ever had," one wrote.
When Markvoort was too frail, she dictated blog posts to her friends and family.
"She had already processed the concept of dying," her mother said. "And for her, she came to terms with it quite quickly. For her it was like, 'Oh, my gosh, I don't know how much time I have. I have things to say.' There was a sense of urgency on her part."
Sometimes, her posts have no words, just pictures of her and her loved ones, with their eyes crossed, tongues sticking out and comical gestures.
"This is the end of my life, but it's not the end of my love," Markvoort said in a video entry.
She died the morning of March 27.
In the same style that she had allowed her readers (who were often strangers) into her life, Markvoort's family plans to hold a memorial service that will run in a live stream on her blog at 7 p.m. ET Friday.

"She indicated that she thought it would be a cool idea if whatever we did, was made available for her online blogging community," her mother said.

Cystic Fibrosis Pharmacy is excited to announce its partnership with the Kevin A Przbyl Breathe Easy Foundation

The Cystic Fibrosis Pharmacy is excited to announce its partnership with the Kevin A Przbyl Breathe Easy Foundation. This foundation is still in its beginning stages and is set to be a fantastic resource for the CF community. Its main goal is to improve the quality of life for CF patients by offering financial assistance for a wide range of needs - from nutrition, medications, co-pays, and medical supplies, to things to help just get through the day like gym memberships, lawn care assistance, auto assistance, and much more!

Together the Kevin A Przybyl Breathe Easy Foundation and the Cystic Fibrosis Pharmacy will be working to provide CF patients with medication, equipment and supplies. All CF patients that receive any financial assistance from this foundation must use the Cystic Fibrosis Pharmacy. This ensures that CF patients are using their funds for medical treatments and insures the patient will receive their order in a timely manor.

On May 21st, 2010, the Breathe Easy Foundation will be hosting its very first fundraising event at The Salt Room Orlando. The Salt Room is becoming a growing partner with the Breath Easy Foundation, offering an amazing supplemental treatment option for those suffering from CF, asthma, allergies, and a wide variety of other issues. The fundraiser, "A Wine and Chocolate Affair, with a Breath of Salt Air" will be from 6-9 and tickets are $15 in advance, $20 at the door. All proceeds from the evening will go to benefit the Breath Easy Foundation.

Tickets will be available for purchase online beginning April 30th - check out the Breathe Easy Foundation website (listed below) for more ticket information.

The price of the ticket includes the following:

* 20 minute session at The Salt Room
* Wine Tasting
* Chocolate Fondue desserts
* Good times, great fellowship!

There will also be a silent auction during the event with some really great items up for bid - autographed sport memorabilia, jewelry, gift baskets, and much more!

Please join us in supporting this great cause!

Check out the websites of our partners for more information!

www.breate-easy.org
www.cfpharmacy.com
www.saltroomorlando.com

The Breathe Easy Foundation and the Salt Room are also on Facebook -- Become a Fan!

Touching Song by Matt Scales

A friend of mine posted this on her blog and  I just wanted to post here to share it.  I had tears and chill bumps!!  Check it out:

http://www.cfvoice.com/info/breathe/index.jsp?usertrack.filter_applied=true&NovaId=2935376852771445003

Brent - Update

Brent went to the Dr. yesterday and he weighed in at 125 lbs.  He is almost 6 ft. tall.  His lung functions stayed the same so that is great that they did not go down.  We are getting ready to head to the beach this weekend for some fun in the sun and some fresh salt air!! 

Bear Fundraising Event for Great Strides

I am selling bears to raise money for the Great Strides Walk being held on May 8th, 2010 at Baldwin Park in Orlando, FL.  The bears are $10.00 each and look like this:

If you are interested, please email me at snydercd@cfl.rr.com for more details.

Chick-fil-A Fundraising Event for Sunny Shores Sea Camp

Another exciting event is on June 10th from 5 pm to 8 pm, the Chick-fil-A in Maitland, FL, will be hosting a Spirit Night in honor of Sunny Shores Sea Camp to raise money to be donated to this amazing organization.

I am responsible for getting special tickets out for people to attend this event to designate sales for this fundraiser. If you are interested in participating, please contact me at snydercd@earthlink.net.

Here is some info on the camp:



Sunny Shores offers a free opportunity to people with Cystic Fibrosis (CF) of all ages and up to 3 immediate family members to attend a Cystic Fibrosis Summer Camp at the Beautiful Disney Vero Beach Resort in Vero Beach Florida.

---

	Founded in 1980 Sunny Shores Sea Camp is a very special place for people with Cystic Fibrosis. History of Sunny Shores Sea Camp Sunny Shores Sea Camp was the idea of three people: Falcon Batchelor (who had CF), Doctor Robert McKey (CF Doctor) and Dick Gilmore (parent of CF). Through personal experience, Falcon knew how much being in and around the salt water helped his condition. The initial idea for a camp was to bring CF kids and teens together so that they could have a summer camp experience at no cost to their families. These campers would be introduced to salt water, exercise, healthy diet and positive CF role models, therein giving the attendees a greater knowledge of cystic fibrosis which could help them live better lives. Additionally, most campers bonded with others attendees who understood their disease. These contacts forged lasting friendships. Founded in 1980, Sunny Shores Sea Camp continues to be a very special place for people with cystic Fibrosis. Over the years Sunny Shores has changed its format from a residential summer camp for children to a week-long respite camp for children, young adults and their immediate families. The summer camp experience comes in the form of a three-night, four-day camp that allows attendees to gain tools and information which will help them to lead more active lives. Nutrition, exercise, hand-washing, positive mental well-being and general lung health are closely linked. The camp’s programs address these issues. Attendees meet contemporaries their own age and family members meet others coping with this illness. Parents have the privilege of being able to relax while listening and gaining helpful, lifelong information from doctors, guest speakers, and successful people living with Cystic Fibrosis. For the past two decades, there has never been a charge to participants of this camp. All proceeds from the fundraisers go directly to this camp experience, as Sunny Shores Sea Camp is a 501 (c) 3 non-profit organization that has worked in conjunction with companies, foundations, and community leaders for the past twenty nine years. Our success would not be possible without the generosity of the South Florida community in conjunction with our golf sponsors, product sponsors, donors and volunteers. All Board members and volunteers of Sunny Shores Sea Camp gladly donate their time. Their only reward is the gratitude these attendees so freely express. All net proceeds donated to Sunny Shores go directly to supporting camp. With advances in medicine we look forward to the day when Sunny Shores Sea Camp is no longer available. Until then we will do whatever it takes to assure that Sunny Shores happens each and every summer.

Great Strides Walk - May 8th

On May 8th, I will be participating in the Cystic Fibrosis Annual Great Strides Walk at Baldwin Park, Orlando, FL.

If you are interested in joining my walk team, please visit my walk page at http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6344&idUser=350611

If you are unable to walk and would just like to make a donation, you can also do that by using the above link.

Thanks!!

Cassie

Brent - Update

Brent has been getting sick again over the last several weeks and he went to the Dr. yesterday and was placed on home IVs. He is having a lot of wheezing and trouble breathing so we are hopeful that a couple days in to the antibiotics we hope he will feel better.

Will keep you posed.

Grieving The Loss of a Wonderful Mother and Grandmother

My mother passed away on February 16, 2010 unexpectedly. She was a wonderful mother and grandmother. She was a constant presence for my son when he was in the hospital or home sick. She was our rock under all circumstances. She was a huge supporter for the fight for a cure for CF. She always wore her purple CF awareness bracelet and never took it off and that is exactly how we left it! I hope she knows the impact she had on my life and the lives of my children and her other two grandchildren.

She was a wonderful person and devoted her life to the Lord, her family and her church. We will remember you always and you will forever be in our hearts!

Welcome ...

Just starting this blog so please be patient. My son has CF and is 21. Although we are through the kid stage, we still have our struggles now that he is an adult.

2009 was a really bad year for Brent healthwise. He was in and out of the hospital way more than the norm. I think it was about 7 times. We are praying for a better 2010!! He was approved for disability and is not working now and we are hoping that this alleviates a lot of the hospitalizations this year. I know that him working where he was contributed tremendously to the deteriation of his health.

My son is currently in Oregon, of all places, visiting friends in the cold and snow :o) I guess it is a great thing for him to see snow ... since we are Florida natives and have not seen it.

We are excited about the upcoming annual Sunny Shores Sea Camp for people with CF that is being held June 24th through 27th in Vero Beach. We have made so many great life long friends through this amazing opportunity!

I am active in volunteering for our local chapter of the Cystic Fibrosis Foundation. We are gearing up for the annual Food and Wine Festival being held in Baldwin Park in Orlando, FL on March 6, 2010. If you would like to attend this event, I am selling tickets. Tickets are $65.00 per person with all proceeds benefiting the CF Foundation in its mission and goals. This event SOLD OUT last year so get your tickets soon!!

I have also formed a walk team for the May 8th Great Strides Walk in Orlando, Baldwin Park - Blue Jacket Park. If you would like to join my team as a walker or donate to the team, please go to www.cff.org/great_strides/cassiesnyder6344.

Will post more soon!!