Supporting the science behind the miracle…


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Zan March of 2015

This picture was on the mind of many people over the past several months.  And for many, they are still thinking of her, praying for her and her continued recovery, every night. Few would know how VERY ill Alexandra was at the time this picture was taken . Weighing only about 72 pounds, her beautiful smile and spirited eyes showed only strength and determination- to never let Cystic Fibrosis define her. This determination stayed with her- through indescribable suffering. As her lungs stop working and her body deteriorated, few understood how terribly close to death she was. And now with a new set of beautiful lungs, she has come back to us.

Alexandra’s will to live has humbled us all. Her story is truly inspiring- and because of the generosity of strangers, it is far from over.

I am kicking off the fundraising for the 2016 Great Strides Walk to Cure Cystic Fibrosis a little early this year because I want it to be the biggest and best EVER!  I also want to remind everyone of the importance of organ donation and the need for donors in New York State.

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Zan’s old CF lungs vs.her beautiful new donated lungs.

The influence the Cystic Fibrosis Foundation has on organ transplantation is fairly substantial.   Because CF is the number two reason for lung transplantation in the country, it is important that donors understand the impact their gift has on the CF community. As you may know, ninety cents of each dollar raised for CF not only goes toward the research to find a cure, but also toward developing new and better transplant medications as well procedures.  It is imperative that the science behind the miracle continues to be supported. This is what saved Alexandra’s life.

This year’s walk will be especially important because of Alexandra and her amazing journey.  Today marks three months post-transplant, one day before she was diagnosed at fifteen months old with CF.

Hundreds of people have been affected by Zan’s fight to live. Her silent suffering and incredible resolve have impacted people across the country, raising awareness for Cystic Fibrosis and organ donation.  Zan’s story is important because she is a true survivor of CF and now has a second chance.  However, we cannot forget her youngest sister, Carley and the thousands of others, who continue to suffer through chronic lung infection, tune-ups and treatment protocols that Zan will no longer have to do.

Our team, The Argentieri Avengers, has even more purpose.  Zan and Carley’s parents now have three children at very different points on the spectrum- one who has survived a double lung transplant, one who does not even carry the CF gene, and one who must continue to walk in her eldest sister’s shoes- hoping every day for a cure.

It’s so important that people like you understand this and how important your continued donations and support of the Cystic Fibrosis Foundation truly are. The Cystic Fibrosis Foundation relies solely on the support of individual donations.  That means the foundation does not receive federal funding of any kind.  The money that goes towards life-changing research. The research and medication that saved Alexandra’s life and has extended Carley’s, comes from people like you and me.

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Zan 8 weeks post-transplant

I am passionate about raising money for the Cystic Fibrosis Foundation because I have two nieces afflicted with this disease.  I am passionate about educating people about this disease because my son and I are both carriers of the CF gene.  I am passionate about encouraging organ donation because it saved the life of my beautiful niece, Alexandra.

One day, your generosity will, yet again, change the lives of these girls and thousands of others with CF when a cure is found.  I believe that day is not far away.

Our friends, family and this community, have stood by our family and these beautiful girls for the past 25 years- and I am unabashedly asking you to stand by us again.  Because of your support and generosity you have added years to the lives of Alexandra and Carley and so many others. You have made a difference!

Be passionate; help me continue to change the lives of my nieces and thousands of others.  Donate now and continue to raise awareness!  Until CF stands for CURE FOUND!

Go to: http://fightcf.cff.org/goto/fighttobreath  To register and donate today.

 

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