Lichen Sclerosus Support Network - Startup Fundraiser

Why make a contribution?

Right now, we're in start up mode, which means lots of expenses... LSSN is currently sponsored solely via membership dues collected, any expenses above and beyond are coming out of our very own Founders pocket, which is why we need you!! 

How much should I give?

No amount is too small* or too big - ANY and all donations are appreciated!! (*Fundly requires a $10 minimum donation)

Don't have the means to donate? We get it! You can still help make an impact by sharing our story or joining our fundraising committee.

How will my donation help make an impact?

The following is a high level overview of estimated expenses and how we anticipate putting your contributions to work in order 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

Our Story: How LSSN started...

Eight years ago a mother of three went in for a routine hysterectomy and came out with an intense 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.

Lichen Sclerosus is a chronic, inflammatory, progressive disease of unknown origins that mostly affects the female genitals but can also affect men. It can lead to fusing of the skin, pain or inability to have sex, and vulvar cancer.

• “LS affects women of all ages and often goes unrecognized and underreported.

• Although the exact prevalence is unknown, LS has been found to affect one in 70 women presenting to a general gynecology practice with practitioners experienced in diagnosing this condition.

• The time from reported onset of symptoms until diagnosis may range from 5 to 15 years.” (1)

Within another 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.

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.

But there wasn’t and she did.

We ask you to help fund these projects, so this story and worse don’t keep repeating themselves like they have for the last 100 years since this disease was discovered.

Help us be a beacon of hope and information for the newly diagnosed and those that have suffered alone for years.

Help us get information out there for women to check themselves and know that this disease is possible before it turns to vulvar cancer.

Help us save families before they are broken by the destruction this illness can wreak in a relationship.

Help us start our nonprofit in any way you can.

-Kathy, Owner/Founder and Lauren, Member/Volunteer