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VLC 2014: Foundation Strategic Plan Update

Monday, April 14, 2014

Outside of the "State of the Science" Session at the annual Volunteer Leadership Conference, each year, I look very forward to hearing the CF Foundation's"Strategic Plan Update".  

I take very seriously my responsibility of fundraising to find my son a cure.  So, I regularly want to make sure the money being raised is being used in the most effective way possible.  It is during this session each year that we volunteers get an update from the Foundation and learn how money is being used.


Rich Mattingly, the CFF's COO, gave this year's "Strategic Plan Update," as he usually does.  I really like Rich.  He is very good at what he does and seems to really appreciate the struggle that those with CF go through and the job we as parents do each day.  I went up to thank him for his work with the Foundation.  And he thanked me for mine.  :)


Rich shared this slide, which underlines the very important parts of the Foundation's new mission statement.  Rich explained that much thought and care had gone in to this statement.  

Rich shared how the Foundation has put a lot of effort towards a Strategic Planning process to help guide the Foundation in the coming years.


This is a list of the Foundation's new objectives going forward.  The Strategic Plan committee came up with these objectives.  I found it helpful to see what kind of focus the Foundation has right now.


This is a list of the parameters the CF Foundation have put on themselves going forward.  I thought the parameter stating no CFF funds will be used to pay directly for patient care was really interesting.  Rich explained that they "have found under no circumstance and under no model has it been beneficial to pay for medical care directly for patients of any disease."


These are 3 of the 6 strategies the Foundation is using to accomplish their mission statement and objectives.


This slide added #6 faster than I was able to capture it on my camera.  But #6 mentioned the inclusion and desire of help from the adult CF community. Rich said, "We will make sure that the voices of CF adults are heard."


This slide demonstrates the Foundation's research priorities.


These are the revenue priorities of the CF Foundation.  I hear there are some great new changes for the Great Strides program coming!!


One of the things that was spoken about a lot at the conference, including during this session was how to make the needs of the CF adults a priority.  Rich said, "We will make sure that the voices of CF adults are heard."


With that in mind, the CFF announced a new campaign they are working on called "My 21,000."  Twenty-one thousand breaths is the number of breaths per day.  The social media campaign will be spearheaded by CF adults in partnership with the CF Foundation in order to encourage fund raising and awareness for Cystic Fibrosis.  I'm really excited about this campaign.  I think the CFF is very plugged in to what the CF community needs in way of resources.  So, it is exciting to see them start this new campaign.



I was also glad to see how the CFF is responding to the CF adult community.  The CFF's new infection control policy does not allow CF patients to attend indoor CFF events.  This has been heartbreaking for our CF community.  So, I am glad to see the CFF work to find new ways to include them.



This year, the entire VLC program was live streamed so CF adults could "attend" online.  In addition, there was a Q/A panel of CF adults during one of the sessions that was really good.  2014 may be the first year with more than 50% of the CF population over 18 years old.  The CFF wants to reflect this change in CF population by making CF adults more present at CF events and activities such as VLC, which is fabulous!  I want there be a place for Bennett when he is an adult.  

The changes at the CFF demonstrate that we are slowly making progress with CF.  Cystic Fibrosis is becoming less and less of a childhood disease.  Each year, I can have more an more hope for Bennett.  I like these changes.

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