Our website use cookies to improve and personalize your experience and to display advertisements(if any). Our website may also include cookies from third parties like Google Adsense, Google Analytics, Youtube. By using the website, you consent to the use of cookies. We have updated our Privacy Policy. Please click on the button to check our Privacy Policy.

Nonprofit Happenings: Updates from our First Month

Nonprofit Happenings: Updates from our First Month

Dreams of a NonProfit Organization to serve the Lichen Sclerosus Community

Everything all started when Kathy started Lichen Sclerosus Podcast. She dreamed big from the beginning. As the podcast grew, so did her ambition. She created a 5-week ‘Get OK with LS' class, started the virtual meetups (learn more here), created the LS Warriors membership (read more here), and founded the Lichen Sclerosus Support Network.

Image of a purple background with a cutout reading "non profit" to represent our first official announcement for the nonprofit.

Lichen Sclerosus Support Network (LSSN) has been serving the LS community for almost a year now. Throughout this time we have provided information and education on our website (lssupport.net), in our podcast (Lichen Sclerosus Podcast), and through our blog (The Lost Labia Chronicles). Now we're ready to take a HUGE step to further our cause.

LSSN's Mission

This nonprofit will begin by serving vagina owners all over the world, eventually helping penis owners and children. Our mission is to provide awareness everywhere it's needed, support at every stage of diagnosis, and hope through information and education.

NonProfit Happenings: Keeping you in the Loop

Here at LSSN, we believe in transparency and keeping you informed. So once a month we’ll be posting “Nonprofit Happenings” to let you know what’s been going on and what we’re planning on doing. Since this is our first such post, we’ll start at the beginning.

The Big Annoucement

April 22nd, we officially announced the idea of turning LSSN into a nonprofit organization. We were touched by the amazing response from our community.

Over the next three weeks, we raised close to $2,400.

Lichen Sclerosus Holistic Healing Summit

Then, on May 10th, we kicked off our first event, the Lichen Sclerosus Holistic Healing Summit – five days of information-packed events in support of a holistic approach to healing. If you missed this, don't worry, we will have many more fundraising events in the future.

It was a huge success. We raised over $2,100 and shared education through our amazing panel of speakers including a pelvic floor physiotherapist, a somatic movement teacher, a psychologist, a leading specialist in LS (Dr. Jill Krapf), and a dietician.

Ready to Start the Incorporation Process of Becoming a Nonprofit Organization

After these two events, we have enough money to start the process of incorporating.

On May 21st, through an amazing connection by Lauren Braun, we were able to meet with the women who run the Empowerment Collaborative for the YWCA in Chicago Illinois.

We told them about our work and our vision for the future. They loved the initiative and wanted to support us.

Next Steps

We are currently waiting to meet with the Illinois Small Business Development Center to develop our business plan and figure out our next steps.

We’re looking forward to getting the process started ASAP.

In the meantime, we will continue to provide information and support to the LS community.

Image of a chat bubble in a neutral background saying, "What's Next".

Want to Help LSSN transition into a Nonprofit Organization?

If you would like to learn how you can support our movement, please click the link below to learn more about volunteering and/or donating.

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.