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’ve updated our Privacy Policy. Please click on the button to check our Privacy Policy.
717 686 9414  |   support@lssupport.net

Help create the nonprofit organization you wish was there when you were diagnosed.

We're transforming Lichen Sclerosus Support Network into a nonprofit organization to prevent the negative emotional and mental health effects that often comes with an LS diagnosis.

Hey!!! Welcome.

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.

We're ready to turn LSSN into a NONPROFIT Organization!

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.

This is no small feat, but we are up for the challenge. Just look at what we have accomplished so far.

Lichen Sclerosus Podcast

In the first year since it went public in February of 2020

  • It has been downloaded more than 17,000 times.
  • Has been viewed on YouTube more than 23,000 times.
  • Grown an audience on Instagram of close to 1,200 followers.
  • Helped hundreds of vagina owners learn more about their disease than they ever learned from their doctors.

Lichen Sclerosus Support Virtual Meetup

We currently hosts two biweekly virtual meetups, so people with LS can gather, share their stories, and ask questions. Since November 2020 we've hosted close to 200 different women in these virtual groups. After each meetup, we receive emails of appreciation. These are just a few.

Thank you for yesterday.  Always so informative.
What a kind group of women.

Jan

I had no idea what to expect but felt great relief and such a lightness after the meeting. I finally felt heard; I finally felt seen.
I feel a sense of belonging and support that I couldn’t have dreamed about prior to the virtual meetup.

Jaclyn

Thank you so much for this meet up tonight.  I can’t express how meaningful this is, and how touched I am. 
I have been having a very difficult time, just as so many women have.  And now there is a window opening to let a little light in.

Louise

LS Warriors

This group is a sisterhood of fighters, learning how to manage their disease, and how to overcome the negative thoughts and emotions that come with an LS diagnosis.

Emotions such as:

Thoughts such as:

  • Fear
  • Worry
  • Loss of self-esteem
  • Anxiety
  • Anger
  • Grief
  • And so many more.
  • I’m not feminine anymore.
  • No one will want to be in a relationship with me.
  • I’m not worthy.
  • Why wasn't I diagnosed sooner?
  • What did I do to cause this?
  • Will I get cancer?
  • And so many more.

Here are what some of them have shared about their experience.

I feel so much calmer since joining this group. And we all know what stress does to our LS. No subject is off limits. It’s handled with humor and compassion. Also we have access to factual information. This group gives me hope.

Diane

The ladies in the group are supportive and freely discuss with the goal to help others and share this journey. The interviews by professionals and members are full of valuable information that has helped me manage my LS. I always know I have these ladies to turn to for help and answers.

Fran

I didn't realize how much I needed this group until I was in it. LS is such a lonely disease, and it is so wonderful having the support system provided in this space. We all have unique LS situations but understand each other's pain and struggles in a way no one else can. This network really is amazing.

Amanda

Where it started

Eight years ago a mother of three went in for a routine hysterectomy and came out with an intense vulvar itch. Five long years and three doctors later she was finally diagnosed with Lichen Sclerosus. Like many with this disease, she had never heard of it before.

She was given a prescription for a steroid, very little information, and sent on her way.

Within three years, this mother would lose half her labia minora to reabsorption (who knew our bodies could do that) and her clitoris would be buried under her fused clitoral hood. She would suffer from loss of self-esteem, femininity, and sex drive affecting her marriage and other relationships.

If there had been a doctor, a nurse, a pamphlet, a booklet, a podcast, a website, a support group, something to tell her what she needed to know, or a place to answer her questions, she would still have her labia minora and clitoral hood in tack. She would still feel whole and not lost self-esteem. She would never have doubted her femininity. She would not have struggled in her relationships.

But there wasn’t and she did.

I am that mother.

And this is a sad but common story for people with LS.

Help create this nonprofit so we can stop stories like this and worse from happening.

You can help us…

  • Be a beacon of hope and information for the newly diagnosed and those that have suffered alone for years.
  • Get information out there for women to check themselves and know that this disease is possible before it turns to vulvar cancer.
  • Save families before they are broken by the destruction this illness can wreak in a relationship.
  • Start our nonprofit in any way you can.

Our 3 Tier Vision

Awareness, education, and information are at the core of our mission. Throughout this process we will have multiple awareness campaigns. Campaigns to educate not just LS patients but doctors and the general public.

STARTING OUT

Our priority will be providing safe spaces for people with LS to come together and get evidence based information from certified peer support specialist.

AS WE GROW

And funds allow we will work with quality doctors to provide medically needed surgeries, treatments, and medications for people who can not afford them.

MOVING FORWARD

We will lobby for research dollars to find the cause, alternative effective treatments, and eventually a cure. Continually working toward one day funding our own research.

How you can help?

Starting a nonprofit organization with our mission and vision is expensive and a lot of work. We need your help to be successful. Help when and how you can. Check back often because our needs will continue to evolve.

100% Organic Ingredients

Volunteers

Running a successful nonprofit requires many tasks. You can help by contributing your time. See where you can offer your talents.

All-natural Fragrances

Donations

Starting a nonprofit requires paying fees and for necessary services. Check out our estimated budget and give what you can.

Up  to 35 Hours of Burn Time

Board Members

As a start-up nonprofit we require a special type of board. See if you or someone you know would like to serve on the board.

If you don't have the time or money we understand.

You can still help us by raising awareness for our cause. Share our efforts with family and across social media. Every bit helps. Like, comment, and share our post so they get further reach. You can still make a difference.

Please Share:

Estimated Started-up Budget

The following is a high-level overview of estimated expenses and how we anticipate putting your contributions to work to formally launch the Lichen Sclerosus Support Network (LSSN):

Organization Startup and Annual Fees
Description: initial and ongoing fees including IRS filing fees, state incorporation, 501(c)(3) fees, Articles of Incorporation, etc.
Anticipated Annual  Expense Amount: $500 – $1,000

Minimum Business Operating Expenses
Description: resources required to support essential business activities (platform subscription, equipment, etc.) 
Anticipated Annual Expense Amount: $3,000

Professional Fees – Initial and Ongoing
Description: startups can be expensive and can also get complicated! While annual involvement of professional services will vary, the year of formation is typically the most labor-intensive requiring more hands-on involvement from professional partners (attorneys, CPAs, consultants, etc.)
Anticipated Annual Expense Amount: $2,000-$10,000

Other/Miscellaneous Expenses
Description: insurance premiums, marketing materials, fundraising activities, and unforeseen expenses.
Anticipated Annual Expense Amount: $4,000 – $6000

Volunteer Job Listings

Board Member Listings