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TheyLive
05-02-2011, 10:07 PM
My wife and I would like to start donating money to a CF charity.  I would prefer one that is helping to find a cure, but she prefers one that is Christian, or gives in the name of Christ, so we have compromised on that.
However, I have had trouble finding one like this.  Can anyone help point me in the right direction?
Thank you.

TheyLive
05-02-2011, 10:07 PM
My wife and I would like to start donating money to a CF charity. I would prefer one that is helping to find a cure, but she prefers one that is Christian, or gives in the name of Christ, so we have compromised on that.
However, I have had trouble finding one like this. Can anyone help point me in the right direction?
Thank you.

TheyLive
05-02-2011, 10:07 PM
<p>My wife and I would like to start donating money to a CF charity. I would prefer one that is helping to find a cure, but she prefers one that is Christian, or gives in the name of Christ, so we have compromised on that.
<p>However, I have had trouble finding one like this. Can anyone help point me in the right direction?
<p>Thank you.

Tammy15
05-03-2011, 06:35 PM
I do not know of one that has the title christian charity but there may be some that deal directly with helping CF patients and families with day to day needs which to me is as important as research.&nbsp; I know in my area where my daughter went to CF center there was an organization started by&nbsp;&nbsp;family of a deceased CF patient. They give patients goodie bags while in hopsital( bags have like magazines CD etc), they also help with medicine copay, sometimes light heat bills and assist helping a family who needs to stay at a hotel while person is in hospital. In fact when my daughter passed in June 2010 I asked friends and family to please donate to them as they always helped my daughter.
You may wish to contact the local CF center and see if they have such an organization they deal with .

Tammy15
05-03-2011, 06:35 PM
I do not know of one that has the title christian charity but there may be some that deal directly with helping CF patients and families with day to day needs which to me is as important as research. I know in my area where my daughter went to CF center there was an organization started byfamily of a deceased CF patient. They give patients goodie bags while in hopsital( bags have like magazines CD etc), they also help with medicine copay, sometimes light heat bills and assist helping a family who needs to stay at a hotel while person is in hospital. In fact when my daughter passed in June 2010 I asked friends and family to please donate to them as they always helped my daughter.
You may wish to contact the local CF center and see if they have such an organization they deal with .

Tammy15
05-03-2011, 06:35 PM
<p>I do not know of one that has the title christian charity but there may be some that deal directly with helping CF patients and families with day to day needs which to me is as important as research. I know in my area where my daughter went to CF center there was an organization started byfamily of a deceased CF patient. They give patients goodie bags while in hopsital( bags have like magazines CD etc), they also help with medicine copay, sometimes light heat bills and assist helping a family who needs to stay at a hotel while person is in hospital. In fact when my daughter passed in June 2010 I asked friends and family to please donate to them as they always helped my daughter.
<p>You may wish to contact the local CF center and see if they have such an organization they deal with .

Angelo
04-17-2014, 02:11 PM
I am alive 3 yrs past my expected funeral date due to receiving adult stem cell treatments. Key word is "adult". As a fellow believer, I am opposed to embryonic stem cell therapies and would not participate in such, even if it guaranteed new life to me. However, my stem cell doctor has been doing amazing things, and only with adult stem cells. I am in the process of trying to raise more money for continued treatments to continue reversing the damage and effects of CF. You can learn more about this doctor (Zannos Grekos) at www.regenocyte.com. The 510c3 he had created is at www.thestemcellalliance.org. You can read my own blog/journey at www.angelodistefano.com. I am currently setting up a YouCaring account to raise funds. I need all the help I can get. I have tried to start an organization, but it is very challenging. (which is why I am using YouCaring and piggybacking on the Alliance when I can). Would love to have further conversation with you if you like.

Beyond my own needs, my heart is really to build a larger effort to raise large sums of money so that other CR'ers can get the treatments. It is a safer alternative to lung transplant without all the harsh drugs and side effects. But because of that, the big drug companies are using the FDA to keep it illegal in the U.S. I have not needed an IV tune up in 3 years. Needed 4 tuneups a year before that.

Before I can expend lots of efforts on building such a fundraising organization, I first need to get much healthier and complete off Oxygen supplementation, have more strength and energy, and not require 12 to 15 hrs of sleep every day. When my daily routine is not such a struggle, I can be more productive to help others. I know a few other CF'ers who want the treatments, but need financial help, just like I do.

you can connect direct via email [email protected] and I will share my ph that way.
Love and Blessings in Messiah,
Angelo