CCFA and Camp Oasis

[Jenn]

- sorry, this is really only for United States parents, but I am curious
about what support other country organizations offer -

Hi fellow parents! My son recently returned from another amazing trip to
CCFA's Camp Oasis. I can't say enough good things about the life-changing
effect it has on him to cope with a chronic illness.

I was just notified by email that CCFA is happy to report that they are
changing camp locations so they can start charging the families a portion of
the cost of camp. Assistance is available to those that meet need
requirements but Camp Oasis was previously free of charge to families across
the country its entire history. They couldn't convince the California site, The
Painted Turtle, to charge, so they changed sites for next year. I didn't know
the rest of the country was paying the last couple years and they plan to
increase that charge each year. They claim camp is running a deficit. CCFA
is non-profit. Read the 2013 financial statement and the 3-year strategic
plan here:
http://www.ccfa.org/about/annual-report-strategic-plan/

Fully paying for camp is about 1.5 million of their 71 million budget. That's
less than 3% of all Program Services. These kids are a huge investment for
CCFA future advocacy and fundraising. But their strategic plan states they
may cancel camp after 2016 if they can't reduce costs. The CCFA Mission
statement specifically includes improving patient quality of life. Camp does
that for these kids and their families. Research is vital, but CCFA can't stop
supporting patient well-being. Putting the financial burden on already
stressed families is unacceptable. I have been active and raised money for
CCFA these last few years, but now feel I can no longer be an advocate
knowing a little money is the real priority.

Camp Oasis should be free of charge to families!!! Help them understand this
by contacting the national and your own local chapter as I have done and
share your thoughts too.

Thank you,
Jennifer

 

[Jmrogers4]

I have done, I was quite a little peeved when I got the letter stating the fee would be raised, we paid $250 the last 4 years and $300 this year, next year it will be $400 ad $500 the year after that.
It seems like they are putting kids at the bottom of the list to support and I have raised and given money to them as well over the last 5 years. You would think they would want to keep these thing going so as these kids grow up they will continue to support and raise awareness for them.
They also canceled the walk in Idaho this year as they said it cost too much money to put on and they did not raise enough.

 

[SupportiveMom]

Camp Oasis has been around for much longer than Canadian camp Camp Got2Go. This is the first year this is offered to kids outside Nova Scotia. If Oasis is charging more and more I certainly hope Canada doesn't follow the model!

Have you spoken to CCFA regarding the support? Have they reached out to drug companies to sponsor camp? Got2Go is funded this year by Jansen. The drug companies get a large profit from those with IBD. They are normally pretty good about giving back. Is this an option?

 

[my little penguin]

http://www.ccfa.org/get-involved/camp-oasis/find-a-camp/camp-oasis-attendance-fee.pdf

The actual PDF about the camp fees .

The thing is most "day " camp without medical staff is about that price with high ratios of campers to Counselors .
Some are more expensive then that .
Overnight camp forget it.
Other groups have camps as well
Asthma , arthritis foundation etc...
They all have to charge fees about the same from the research I have seen .

Unfortunately camps cost money to run no matter what the charity .
Hope that puts things into perspective

 

[Cosmojo]

I use to be heavily involved with CCFA and can tell you out of experience that children are always priority, but like previously said having medical professionals there and the associated precautions cost a lot. Along with camp oasis they sponsor MANY research projects searching for better treatments or someday a cure, along with fellowships for talented doctors. They also do webinars, have support groups, have fundraising campaigns to host, have college based outreach, and don't forget about all the educational materials they give out.
I understand the cost is a lot for many people but unfortunately the funding situations means it can't all get done. It also gets dicey when certain pharmaceutical groups sponsor them because they come under criticism for then "pushing" certain drugs over others. I wish they could do more, maybe this is were we step in and help with more fundraising!

 

[Sudsy]

I'm a RN and I'm pretty sure i got an email from CCFa earlier this year asking if I'd like to donate my time to work at Camp Oasis. My dd's Remicade nurse also told me that she had volunteered there in the past.

Maybe the doctors get paid, but I don't think the nurses do.

 

[34 Hour Reset]

My son just returned from Camp Oasis here in Wisconsin last week. I thought the price was pretty reasonable, especially for the great times and friends he made. :ghug:

 

[Jenn]

I think we all agree that the experience is worth whatever price for our children. It frustrates me that CCFA paid entirely for camp before and only stopped recently. They have the funds, they choose to use them otherwise, which I don't think is fair to the families caught in the middle of affording it without issue and those meeting the scholarship criteria. Maybe I'm not so surprised that families didn't protest it around the country sooner, we are already lacking for the time and energy in a lost cause.

I am all for funding research too of course, and raising awareness is important, as is adult patient support. It's really not that much of their budget to go ahead and fund camp fully. The Painted Turtle holds this line of not charging families at all, so CCFA changed sites in CA, instead of taking a lesson from it, in what matters.