Beyond the Bubble: Littlest Tumor Foundation

For many Lawrentians, being engaged with the community is one of the most important aspects of their Lawrence experience. Although the Lawrence community has a lot to offer, one might sometimes feel confined within the parameters of the very real Lawrence bubble. For many students, branching out and getting involved with local organizations is the way to go.
Lawrence has had a long tradition of partnering with local organizations and institutions, such as our long-standing LARY buddy and VITAL tutoring programs. However, many Lawrentians are reaching out to find new opportunities and establish new connections with the community and beyond.

One of the less heard of organizations that Lawrentians have been involved with is the Littlest Tumor Foundation (LTF), an advocacy non-profit organization that campaign, raise funds and spread awareness about neurofibromatosis (NF). This is a genetic disorder that some were born with and causes them to have tumors growing anywhere in their bodies that could interfere with daily life, cause abnormalities that greatly affect their lives, as well as become cancerous or lead to other disorders. Founded by a former Appleton resident, Tracy Wirtanen, a mother of a child with NF, LTF has grown over the years to become a key organization in the national advocacy network for NF.

For the past few years, many Lawrentians have been involved with LTF, learning firsthand experience in the workings of a nonprofit organization. As LTF has a small team that covers many bases of fundraising, advocacy, raising awareness and promoting wellness for people with NF and their families, Lawrentians working with LTF have been able to try out different roles and to have a broad grasp of the work they have been doing.

Talking to us, junior and current intern Lauren Ray shared her experience after three months of working with LTF: “I have really enjoyed my experience interning at LTF because I have had the opportunity to learn so much about nonprofit work and the importance of securing and supporting congressionally directed medical research programs.”

Besides year-round advocacy efforts, LTF has an annual retreat every summer for people with LTF and their families. This is something that LTF founder, Tracy Wirtanen, is most proud of, as it is fun, rewarding and meaningful for all involved. Many Lawrentians have taken the chance to volunteer for the retreat when they are in Appleton area for the summer.

For Ray, the retreat was her favorite too. “The most memorable experience I’ve had thus far at LTF was the family wellness retreat,” said Ray. “It was incredible to see the ways in which the families connected.”

Looking forward, LTF is gearing up for leading a congressional briefing and a national summit in Washington D.C. this December. According to Wirtanen, this is an incredibly important occasion “to educate legislators about the importance of the NF with the Congressionally Directed Medical Research Program,” said she.

In addition, the national summit is where all the different actors in the NF advocacy world come together.

“We hope that when academia, government funding, private funding and patient organizations come together, medical solutions are possible,” Wirtanen added.

Still rooted in the community here in the Appleton area and Wisconsin in general, LTF hopes to do more work at a regional level with the help of volunteers and interns, especially from Lawrence University to support the network of LTF patients and families they have been in contact with for the last few years.

This Friday, Oct. 7, at the match between Lawrence University Women’s Volleyball team and Monmouth University, LTF will be getting signatures for their cause. With the help from Lawrentians as interns, volunteers and allies, LTF hopes to grow even further for their cause.

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