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CF Foundation Conference, Part 3: Nuggets of Gold

Wednesday, March 7, 2012

A common joke among CF families and those of us who participate in Great Strides, the CF Foundation's largest annual fundraiser is...just as soon as you're done raising money for Great Strides, it's time to begin again!

It's a joke but it's not entirely untrue.  Fundraising begins around January and ends around May.  But planning for such an event happens all year long. 

This year-long process with a Spring-time push can quickly cause burn-out among those who do it.  And I'm not an exception.


So, I am so very glad to have been able to attend the CF Foundation's Volunteer Leadership Conference in February as it gave me exactly what I needed in the way of an energy boost to keep going.


In fact, I think it catapulted me even farther!  This year, I have found some dear friends who have come along side me to help me accomplish a bigger goal than ever.  I look forward to sharing more about this in the coming weeks.

But before the VLC Conference becomes a distant memory, I want to document some of the most important nuggets I gained.  I hope to use this as I return to it each year around this time of year...

VLC NUGGET #1:
I heard a quote by a Cystic Fibrosis mom at the conference that said,
"People ask me all the time how I do it.  I don't necessarily know how.  But I know why."  

I love this quote.  I feel it's the answer to a similar question I ask myself, "Why can't I stop doing what I do?"  The answer is: Bennett.  I am his mother, his advocate, his cheerleader.  If I don't do it, who will?

VLC NUGGET #2:
One of the speakers at the Conference reminded us:
People don't give to diseases.  People don't give to organizations.  People give to people.  

Our story, the story of Bennett's fight, is the single most powerful tool for gaining individuals, groups and businesses to join our fight.  People don't care about statistics, about how the disease affects the body.  What they care about is helping someone in need.  This is why we choose to tell our story, through video, through our Facebook and through our blog.  And as Bennett gets bigger, I'll teach him how to tell his story. 

VLC NUGGET #3:
Here's another quote I remember from one of the speakers:
Money buys science.  Science buys life.  

I remember before I began raising money for CF, I thought, "there are so many people and places that want money.  Why must I ask for money for Cystic Fibrosis?"  And yet, I later learned that the answer is: with no government funding and no pharmaceutical companies willing to invest in medications to cure Cystic Fibrosis, it is up to us to raise money to buy the science we need to save Bennett's life.

When people give, they must understand that the money is to buy the science.  The science is what will buy Bennett his life.

VLC NUGGET #4:
The Cystic Fibrosis Foundation is being run well and spending the money money we raise very wisely.  "The CF Foundation spends their money the right way, all towards research."

One of my favorite moments came from a session encouraging volunteers and CFF chapters to consider more corporate sponsorships.  A high-up GEICO representative (GEICO's national organization supports Great Strides nationally) answered a question given to him by the session host: "Why do you partner with the CF Foundation as your charity of choice?"

The GEICO rep (who may have been an VP in the company, I can't remember at this point) said, "We believe that the Cystic Fibrosis Foundation is a good fit for GEICO because it runs its organization much like we do our own.  For example, their headquarters looks alot like ours."

There was some laughter from the audience.  But after a second or two, it was obvious that nobody understood what he was saying.

The host followed up on his answer, "what do you mean by that?  What do you mean when you say the CF Foundation's Headquarters looks alot like GEICO's?"

The corporate GEICO representative replied, "Well, when I first walked in to the Cystic Fibrosis Foundation's headquarters, I was struck by the fact that there isn't much there except for some basic furniture and a bunch of people working.  This made me happy to see.  Because I'm not gonna be out there fundraising to buy the CF Foundation a new foundation for their lobby.  It is obvious by the office, how they spend their money.  The CF Foundation spends their money the right way, all towards research."

I think this may have been the single most important thing I could have heard from the entire Conference.

VLC NUGGET #5:
We are seriously, seriously, not far from managing this disease in a significant life-extending sort of way.

There was lots of very hopeful talk going on at the Conference.  But, at one point, I found myself starting to daydream during Dr. Campbell's "State of Science" Update and trying to comfort myself, "eh, don't get your hopes up, we are still so far away from a cure - Bennett may never benefit from what Dr. Campbell is talking about"...

...to which I had to reply to my apathetic self, "wait a minute, Breck, you're at a *real* CFF function.  You are hearing it from the horses mouth!  It doesn't get any better than this.  When they say we're close, it's ok to actually believe it!!"


VLC NUGGET #6:
I am not alone.
At this conference, I watched as person after person was given an award or recognized for the tremendous work they are doing on behalf of the Cystic Fibrosis Foundation.  I saw example after example of people who spend day after day building partnerships and raising money for all those with CF, including my son!

I could not help but be inspired to see the success that is happening within the organization.  The CF Foundation is working with more pharmaceutical companies.  More corporations are willing to partner with the CF Foundation to raise money.  More local events are meeting and exceeding their fundraising goals (one family raise more than $200,000 in one year alone for their Great Strides event!).

I sat next to people who are doing what I do but in their small town.  These people I met were those who were ever so slightly dangerous when it comes to the challenge of saving the one they love who are slowly losing their ability to breathe.

I am not alone.  There is an army out there pounding the pavement and making some serious great strides for funding a cure for Cystic Fibrosis.

VLC NUGGET #7:
The new CFF logo is adorable and is a great indication that we are at the dawn of a new era in our fight against CF.  The new logo will take about 2 years to full roll out as a cost effective measure (refer to VLC Nugget #4) but has already begun to be used.  Here is a video they showed us: http://youtu.be/EsCfijn-z1E.  This is a part of their "Adding Tomorrows" campaign which is their new campaign for corporate sponsors.  They don't show the new logo at the end of this video but it will be coming along here soon.  The bottom line is the CFF is actively recruiting national corporations to work with us on some national partnerships.  Think American Airlines, GEICO, CVS stores, etc.



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Here are some other pieces of random information for those who are interested... (Thank you to my friend and fellow CF Mama Kara Kelly for documenting this information at the VLC Conference!!)
* More than 300 prescriptions for Kalydeco have gone out for those 1200 people in the US who have the G551D mutation.
* About 100 people are in the Phase 2b Trial for the Kalydeco/VX-809 combo study that ends this summer.  They hope to have results/data by late summer.  The VX-661 drug was called the backup to VX-809. It is pretty much the same but metabolized differently and they wanted to have the next generation ready to go in case VX-809 doesn't.
* Researchers believe there is a 50% chance that drug VX-809 will work at this point. If it goes to phase 3, they believe that chance goes up to 80%.  They will have data on drug VX-661 at that time as well.  At that point, pharmaceutical company Vertex will decide whether they will go forward with drug VX-809 or VX-661 into phase 3.  They stated they discovered this compound's potential a few years ago. They were asked why this is not listed on the pipeline CFF site and said because it is in a sense the same as 809 in most ways and in test tube phase. They did mention most of these studies in the lab phase are on human cells rather than rats- a big step as it is one less step and targets CFTR directly.
* The results of the VX-770/VX-809 drug shows potential to be even more effective than VX-770 alone and may restore up to 50% of what the cell should be doing.  VX-770 has shown sweat chloride to drop from 100 to 50, on average. They have seen a 10% absolute change in lung function.
* The CFF noted that new antibiotics, anti-inflammatory and nutritional drugs are coming soon.  Some are showing particularly effective in a fight against resistant bacteria.

* Dr. Campbell showed a slide giving an example of what they believe may happen if they give a combination of three drugs (VX-770 + VX-809 + VRT1019691 is being studied, for example).  The slide showed that there is a significant potential that Kalydeco, given with future medicines currently being studied, will make it such that CF symptoms are not clinically present and will drastically add decades to normal lifespan and quality of life.
* They believe Kalydeco will work for other mutations in its category.  They anticipate over the next few years, after trials, adding onto the FDA label, mutations cleared to take it.  They believe this will effect 10-20% of the CF population but didn't mention mutation types. The VX-809 combo could potentially effect 50-90% of the population.
* The CFF gave us what they hope is a reasonable timeline (although it's potential at this point): 2014 drug Ataluren, 2015 add in other mutations that can take Kalydeco (affects 15-20% population), 2016 combo drug potential approved (affects 50-90% population), 2020 work on next generation drugs and making previous mentioned even better.
* Ataluren study is done and data coming soon. This will effect 10% cf population.
* With regard to a cure, the Cystic Fibrosis Foundation communicated that they feel like they now have a road map to the finish line (and are nearing it).
* The Cystic Fibrosis Foundation have reinvested the royalties from drugs like Tobi, enzymes, etc right back to the most promising drug company Vertex.  They also have new partnerships with companies like Genzyme, Pfizer, Vertex, GSK.  They are spending almost 100 million dollars in these companies to study about 6 million compounds!  
* The Cystic Fibrosis Foundation recently opened the first CFF research lab in Bedford, MA where they can do their own research. They believe it is the first type of lab created by a non-profit foundation.
* They noted that a CF patient is often needing a lung transplant by age 30.  They believe that if things continue the way we are going, CF patients may not need one until age 60.  That's pretty significant!  

3 Responses to “CF Foundation Conference, Part 3: Nuggets of Gold”

  1. Breck, Thank you for these nuggets! Nugget number 2 is something that I was thinking about a lot this morning, as we are putting the finishing touches on our video and getting ready to send out the letter/email. Let's be honest, CF wasn't on my charitable donation list 3 years ago. And yet, now, it's front and center. Asking for donations is hard for me, but I feel I have to give my friends a chance to show that they support me. They may not understand the disease, the cause, the organization, or anything else, but they support me. And hopefully, they will donate. Thinking that way has also opened my heart to be more giving to others who ask for my support. That being said, I'm grateful for families out there who aren't afraid to open their mouths. If this were left all up to me, my son wouldn't make it too far. I'm glad we're all in this together and that I have examples like you to make me feel more comfortable and open with our request. So, thank YOU!

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  2. Thank you, thank you, thank you so much for posting this info from the conference! Seeing all of this gives me much more hope for the future of CF patients!

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  3. Breck- you are amazing! those nuggets are so encouraging. so glad you have a good support system to help with the event. what a great post. it really does instill hope for CF patients everywhere and I kept daydreaming of a future 'Dr.Bennett' while I was reading it.

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