Anne Spurgeon
  • Female
  • Madison, WI
  • United States
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  • Christine Falsetti
  • Katie's Mom - Robyn
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I'm Anne, mom to cancer survivor Joseph & director of Capital Candlelighters in Madison, WI. We support, educate and advocate for kids with cancer and raise awareness in WI.

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City
Madison
State
WI
Country
USA
Please list your CarePage/Caring Bridge/blog site, your organization, or your reason for being here?
www.capcan.org

Thinking of starting your own Candlelighters' affiliate?

We've had great success over the past decade in building our local Candlelighters' affiliate here in Madison, WI. We now serve all of the families of kids treated for cancer at the American Family Children's Hospital, starting the week of diagnosis and continuing into survivorship or, nearly 30% of the time, through the loss of their child. Learn more about us at www.capcan.org

Candlelighters is a grassroots effort all the way. Each Candlelighters' affiliate is a separate non-profit organization and decides how best to support and work with the childhood cancer patients and survivors in their area. Some affiliates primarily do advocacy and awareness activities (Nashville,TN is one of these), others focus more on emotional support through email lists, phone calls, group meetings, parties and social events, etc. Most provide informational materials, books and pamphlets developed and published by the national Candlelighters' office. Our affiliate does all these things, and like many others also sponsors a Hero Bead program for patients through the hospital and clinics and throws some silly, fun, forget- your-problems parties. We have been successful in fundraising over the last few years and have been able to increase our financial assistance to families in difficult circumstances, covering expenses that, if left unmet, might endanger the health and safety of the child with cancer. These often include car repairs and other transportation expenses, groceries, rent or mortgage, utility bills, co-pays for medicines, etc.

I'd be happy to talk with anyone who's thinking of starting their own affiliate. It's easy you just need a board of energetic people (made up of at least 51% parents, survivors or another direct relative of a child with cancer) and a desire to improve the lives of kids and families fighting cancer in your area. We can help you learn how to do the rest!

The Candlelighters' Childhood Cancer Foundation office in Maryland is focused on efforts that support our kids and families on a national level. Given the decade + stall in improved survivorship and the unconscionable lack of new drugs to treat childhood cancer (again, just ONE in the last 10 years!) CCCF has recently begun to support efforts at spurring research into high tech targeted therapeutics. Also, the national director testifies before congressional committees and works with congressional staff members on crafting legislation to create policies that will lead to more and better research funding, more generous family leave policies for parents of sick children, broader funding for medical coverage for new procedures, and on and on. When it's time for a massive letter writing effort in support of legislation or funding or it's time to work on a major awareness campaign, you want to be on their email list! It's easy to make sure they have your information at the Candlelighters Childhood Cancer Foundation web site, www.candlelighters.org.

Comment Wall (4 comments)

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At 1:58pm on November 18, 2009, Brenda Everson-Wiesman said…
I forgot to leave the link info. You can go to the Team Unite link at the top of the page or go to the link that was just posted today for CureSearch. Could you ask others who are constituents of Wisconsin to join us in the effort? Thank you. Candlelighters is probablly already involved with this. I am a member of the group in Omaha, at Children's Hospital. Great group!
At 1:54pm on November 18, 2009, Brenda Everson-Wiesman said…
Hi Anne:
I am trying to gather support for the bill that is in conference now that will provide funds for the Caroline Pryce Walker Conquer Childhood Cancer Act. Could you contact your congress person, David Obey, about supporting this?
At 2:47pm on September 26, 2008, AJs Dad said…
Yep, familiar with CL from our journey. You guys do great work. Our objective is to raise awareness. But, we love to have reps from the CC orgs here to represent and tell about what you do.
At 2:36pm on September 26, 2008, AJs Dad said…
Hey Anne, when you get settled in, let talk.
 
 
 

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