Best CF related charity?

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AllansGirl

Guest
A lot of Allan's friends want to donate to a CF or maybe organ transplant-related charity in his name. But, which one? I know Allan wasn't actually all that fond of the Cystic Fibrosis Foundation--he would have wanted donations to go to a charity that was geared more towards helping patients now rather than research. I think he may have donated once to either the Boomer Esiason Foundation or the Reach for the Stars foundation. Lungs For Life looks like it's probably a good one, too. Any suggestions would be helpful. Thanks.
 

julie

New member
Jess, here are a few.....

<a target=new class=ftalternatingbarlinklarge href="http://www.milanfoundation.org/">http://www.milanfoundation.org/</a> They provide DIRECT assistance to those living with CF, family members and so on. Mark and I actually were having a very difficult financial time last winter and it was groceries or heat or rent.... we got a check from them immediately-absolutely wonderful people! And they HELP the families, to me that is what is the most important.

<a target=new class=ftalternatingbarlinklarge href="http://www.esiason.org/cfTreat7.html">http://www.esiason.org/cfTreat7.html</a> They provide scholarships to those with CF to further their education. Mark got a $350 scholarship for 2 semesters that was paid directly to Washington State University for tuition last year. Another charity that DIRECTLY assists those struggling.

Additionally, I'm not sure if this is something you are looking at, but since male infertility CAN be CF related for a majority of Males with CF, I have another website I am going to post.
<a target=new class=ftalternatingbarlinklarge href="http://www.inciid.org/article.php?cat=news&id=386">http://www.inciid.org/article.php?cat=news&id=386</a>

Here's a bit of information.....
---------------------------From INCIID the Heart is a new program established in late April of 2004. It is an "on going" annual program designed to assist infertile couples who are trying to build a family.

The costs associated with in vitro fertilization (IVF) and other medical treatments for infertility, the fact most insurance companies do not provide coverage for many types of fertility treatments, and the cost of alternatives such as adoption, leaves many suffering from infertility with little hope for realizing their dreams of family. INCIID has collected more than $1.3 Million in donated IVF services and we intend to KEEP collecting services and then give them away to consumers with medical and financial need for IVF.

Nancy Hemenway, INCIID Founder and Executive Director says that "infertility care is sometimes portrayed as ?wealthy couples creating designer babies.? That?s because only about 10% of insurance carriers cover IVF. But nothing could be further from the truth. The From INCIID the Heart program will help eliminate the barrier preventing many couples from having children, bypassing the need for coverage."

There are at least five million infertile couples in the U.S., and of those, approximately two million are unable to conceive without IVF treatment. The majority have no insurance coverage for IVF and its associated medications, which can range in cost between $10,000 and $15,000 per couple.

INCIID has arranged for a number of respected IVF clinics in the U.S. to donate their expertise and state-of-the-art facilities so that patients who do not have the financial resources may have the opportunity to build a family. The program will cover expenses for medication, lab work and ultrasound exams.

Couples earning up to $60,000 a year may be eligible for participation in the program, but the final decisions will take into account cost-of-living in different regions of the country. Applicants will be required to provide copies of their most recent tax returns and paystubs and supply a letter from their doctor recommending them as candidates for IVF. While consideration will be given to those who already have one child, preference will be given to those with no children.

"Our goal," says Hemenway, "is to give those without insurance coverage an opportunity to fulfill their dream of becoming parents.-----------
 

anonymous

New member
What about donating to a specific patients campaign to raise money for a transplant? Maybe there is someone else out there in a similar position Allan was in and the donation could go to that persons campaign. Just a suggestion.
 

anonymous

New member
I understand that Allan wasn't the biggest fan of the CFF, however, the CF specific treatments, and the ongoing development and refinement of the CF Clinic system would not be possible without it. I am sure that those very same clinics and treatments added years to Allan's life, and add years to all of our lives. There is no organization doing more for CFers anywhere.

My only other recommendation would be to find a CFer young, or old, who is facing enormous medical and financial challenges, and give the money to them. I don't exactly know how you would go about picking from the many cases you could find, but its an idea. You could try to find someone who writes, who shares Allan's love of life, and wonderful sense of humor, etc.... and make the selection based on that.

I hope this helps, and I'm so very sorry that you have to find an alternative use for this money... I wish it could have been of more help to Allan.

Chris

25 w/cf
 

CFHockeyMom

New member
Since Allan wasn't a huge fan of the CFF, I think the next best bet would be the Boomer Esiason Foundation. I've had the oportunity to meet him and see some of the great work he's done. He and the foundation are very generous.

He came to speak at our clinic's CF Family night. At the meeting was a young woman with CF. She had just moved out of her parents house and in with her boyfriend. Obvioulsy finances were tight. One of the topics Boomer had touched on dealt with CFers getting to know one another via the internet. I don't remember the specifics but this young woman peaked Boomer's interest. Well, one thing led to another and it came up that she not only couldn't afford internet access but didn't have a computer either. It only took a second and Boomer promised her a new computer and internet access for as long as she wanted. He immeadiately sent one of his "people" into the crowd to get her information.

I do support the CFF but know quite a few people who take issue with them. I think the Esiason Foundation is a wonderful alternative.
 

Purplelungz

New member
If you want to do a smaller charity that helps families I personally would go the Millan Foundation route. Or even find someone in need of raising money for a transplant and donate to them. Heck you could even set up a type of "grant" the Richard Allan Grant to help those trying to raise money for a transplant or something similiar. I'm sure if you just posted and ask for people in need of transplant funds to write to you. IF thats what you want to do. Since Allan really really didnt like the CFF, we had some discussion on it, I would try to find a smaller charity or a single person, even one or two to donate to. Hey maybe even buy a computer for the young girl on CF2Chat...not really being serious but its an option. (and im not being serious because im mean but because there are probably other options for her-i could be wrong).

I know you will pick the right one and whatever you pick Allan would be proud of you.
Amanda
 

EmilysMom

New member
I also have some issues with the CF Foundation as an organization. We met Boomer too and had the same feeling of true altruism with him that if you needed something, you could go to him and ask and "poof"; it would be there. I think the idea of helping someone in Allan's position is also a great idea. Maybe (not even maybe) there probably is someone else in his position right now trying to raise money for a transplant that could use the money and that would be a good place for donations too!
If you want to go a different direction, I would recommend The Starlight Foundation which grants wishes to kids with CF. Make A Wish doesn't always do CF kids.
 

Allie

New member
I have to nth the Millan foundation...they will always get any extra money I happen to have lying around because they directly help people who are struggling. And I prefer that to the CFF, although I do think research is important too.

It's really all a matter of preference, donating to charity for CF can never really be 'bad' <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Just wanted to add that PACFI does provide help to families but I don't know whether its regionaly or nationally.

The Milan foundation would be my number 1 choice
 

anonymous

New member
CFF has the top guy making over $500,000 per year, I nolonger support the foundation. This sounds like the Red Cross (top guys take huge amounts of the money).

Boomer's organization has the top guy making under 100 K living in NY city, so he gets some donations I use to send to the CFF.

Another small group out of Atlanta is the Reaching Out Foundation for Cystic Fibrosis. Info at reachingoutfoundation.org.. This is run by a CF TX and supplies funds for rent, gas etc.
 

julie

New member
I've had many peoople write to me about "cf support" foundations that can financially assist them, over the last year. I use to include Lungs for life, the reaching out foundation i the informaiton I sent them, but have recieved feedback that #1. lungs for life foundation requires that the request for assistance comes from a social worker only. Some people don't have social workers, don't have access to one, it isn't covered by insurance, they can't afford to pay for it.... it just ended up being a frustrating experience for many of the people I gave info to. #2. I have recieved inforation that the reaching out information STRICTLY scrutnizes the way people spend their money, "why do you spend so much in rent, send us your credit card bills, the person with CF should seek a part time job" and people are offended by that, plus, expenses come up, sometimes people want to get a bit frivilous, even when they can't afford it- and it is understandable that they want some information on financial records but I've been told it's rediculious. Those are just a few experiences, but I felt the need to share it.
 
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