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Rose's Senior Year = Annual Fund Goes Extra

D. Maurice Kreis

D. Maurice Kreis

I am so happy to be the dad of a healthy, active, successful, wise and funny almost-grown-up daughter who also happens to have cystic fibrosis. And the way I choose to share my delight is by asking you to join me in donating to the Annual Fund of the Cystic Fibrosis Foundation -- the very best healthcare charity in the realm.

Rose turns 18 in November, which means she officially becomes an adult responsible for her own CF care. Though that's a bittersweet time for me, I know she makes this transition at a time when CF is on the brink of becoming a fully controllable medical condition.

Unfortunately, we aren't there yet -- especially for people like Rose who have so-called "rare and nonsense" CF mutations. The CFF is spending hundreds of millions of dollars on researching treaments that will help such patients, including the "Path to a Cure" initiative announced in November -- $500 million in NEW research and investment. Meanwhile, I have been hearing too many stories for my taste about young adults with CF for whom a lung transplant is the reality. I'll be honest: I'm anxious and scared about that.

Rose spenr her summer doing dressage competitions (and training) and now she is busy applying to college -- some impressive ones on her list! -- as she finishes her studies at the Putney School. Meanwhile, I will be pursuing glory by raising money for the CFF Annual Fund, thus hopefully doing right by my official title as Individual Giving Chair for the CFF Northern New England Chapter. We would be so grateful for your support!

For even MORE info, check out: kreis.coop/blog/2019/11/4/an-exciting-time-for-nonsense

NOV
12

Rose would kill me if I let that old photo (below) be the last word -- so here's a recent image.

NOV
11

To quote a flyer from the Northern New England Chapter of the CFF, "the Cystic Fibrosis Foundation has unrestricted financial reserves of about 10 times its budgeted 2019 annual expenses, following a one-time royalty sale in 2014." In other words, the CFF's innovative "Venture Philanthropy" approach, which in this case involved co-investing with Vertex in modulator drugs like Kalydeco, Orkambi, Symdeko and Trikafta, netted the organization $3.3 billion five years ago when the Foundation cashed out its investment. A reasonable question I sometimes get is: Why should we donate money to such a well-resourced nonprofit organization? The answer is that "solving" cystic fibrosis is a formidable scientific task -- one that will be more expensive than even the massive resources the CFF now has in the bank. I've heard estimates as high as $9 billion. Although the Cystic Fibrosis Foundation is indeed one of the nation's most well-resourced healthcare charities, please keep in mind that the CFF is not Harvard or Princeton or (my alma mater) Middlebury. The CFF does not use donations to build a massive and elegant campus/real estate empire. The headquarters of the Foundation is a modest suite of offices in suburban Washington. Its other 'edifice' is the similarly modest CF Therapeutics Lab in suburban Boston. The billions available to the CFF are poured into scientific initiatives and programs that improve CF care and help people with CF manage their lives. Here's a link to more information about the CFF Venture Philanthropy model: www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/CF-Foundation-Venture-Philanthropy-Model. I'm proud of everything the CFF does, from the creation of a national CF patient registry in 1966 to defending the Affordable Care Act in recent years. You should not hesitate to include this excellent 501c3 nonprofit among the objects of your generosity. I do!

NOV
10

Rose in 2012 with Bob Beall, who was then the CEO of the Cystic Fibrosis Foundation. Bob's successor, Preston Campbell, knows all about Rose. Preston's soon-to-be successor, Mike Boyle, does too. They've got her back -- see, e.g., Path to a Cure.

NOV
9

Francis Collins in Nashville: No one will be left behind

In late October I had the astonishing experience of attending the annual North American Cystic Fibrosis Conference. This year it took place just days after the FDA approved the new CF modulator drug Trikafta -- which mean that a drug that treats the underlying cellular biology of the disease is now available for 90 percent of people with CF. It was a bittersweet time. What an honor to be in the room when CF superstar like Francis Collins, co-leader of the team that isolated the CF gene in 1989 and, now, the director of the National Institutes of Health, too the stage and literally sang with joy. How appropriate, since we were in Nashville -- Music City! But those modulator drugs will NOT help Rose -- she's in the 10 percent of patients with so-called "rare and nonsense" mutations. Thus I was so delighted to see the CFF unveil its "Path To A Cure" initiative, committing another half a billion dollars to research into treatments that will work for ALL CF patients, including us "rare and nonsense" families. Some have called it a "moon-shot" initiative. My moon-shot is to get EVERYONE I KNOW to join me in supporting this work, via a donation here, before the end of 2019. Earnest thanks to all who have already done so.

Comments

$1,835
raised of $2,500 goal
 

Recent Donations

$75.00
1. JSJake Schlachter
Thank you Don for sharing such a moving account of the conference and the momentum for a cure! http://www.kreis.coop/blog/2019/11/4/an-exciting-time-for-nonsense
$100.00
2. AGArt Ginsberg
$500.00
3. MbMarc Berezin
I am happy to donate yet sad there is so much more work and research that needs to be done.
$30.00
4. SESusan Ellis
$30.00
5. TDToby Davis
Go Rose go!!
$1,000.00
6. ?Anonymous
Rose's triple combo = excellence in dressage, academic success, and tons of insight about all of life's challenges because she does so well with her CF care.