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.
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.
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.
Volunteers
Running a successful nonprofit requires many tasks. You can help by contributing your time. See where you can offer your talents.
Donations
Starting a nonprofit requires paying fees and for necessary services. Check out our estimated budget and give what you can.
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.
Volunteer Job Listings
Social Media Manager
This position requires someone to create and schedule at least 3 quality posts a week, to promote our efforts across Instagram and Facebook for Lichen Sclerosus Support Network.
Provider Directory Manager
This position requires someone to maintain the provider directory. This includes adding new entries, removing duplicates, and doing quality check updates.
Marketing Manager
This position requires someone to help craft weekly marketing materials for emails, craft post for our ambassadors to share, and come up with ideas to grow awareness of LSSN and it's efforts.
Fundraising Committee
We need volunteers to help organize and implement fundraising stragies.
Video Editor
As we continue to grow, we need help keeping the podcast going. We have close to 10 interviews done, we just need someone to edit them.
If you have video editing skills and would love to be part of the podcast team, click the button below and fill out the application.
Board Member Listings
General Responsibilities for All Members
This is an amazing opportunity to shape this organization. As a start-up board member, you will be creating the foundation we will stand on. You will craft the final purpose, mission, and vision of Lichen Sclerosus Support Network. You will approve our bylaws and direct our programming.
It is a great responsibility.
As a nonprofit board member, you will be responsible for following through on promises and assisting the organization to the best of your abilities. You should fully support and embody our organization’s mission and be loyal ambassadors for our cause. When acting on behalf of the organization, as a board member you must put aside your personal and professional interests.
All activities and decisions should be in the best interest of the organization, not in the best interest of the board member.
As a starting board member, you will help create our governing rules and procedures, which will have to be adhered to by all organization members present and future.
Each individual board member is expected to
- know the organization’s mission, policies, programs, and needs
- faithfully read and understand the organization’s financial statements
- serve as active advocates and ambassadors for the organization and fully engage in identifying and securing the financial resources and partnerships necessary for the organization to advance its mission
- leverage connections, networks, and resources to develop collective action to fully achieve the organization’s mission
- give a meaningful personal financial donation
- help identify personal connections that can benefit the organization’s fundraising and reputational standing and can influence public policy
- prepare for, attend, and conscientiously participate in board meetings
- participate fully in one or more committees
- follow the organization’s bylaws, policies, and board resolutions
- sign an annual conflict-of-interest disclosure and update it during the year if necessary, as well as disclose potential conflicts before meetings and actual conflicts during meetings
- maintain confidentiality about all internal matters of the organization
Vice President
This person will work closely beside the President and help in their duties. Including but not limited to setting the goals and objectives with the board and ensure they are met, holding members accountable for attending meetings, fulfilling the president’s duties when the presiding officer is absent.
As a startup board this is a very important and time intensive position. Do not apply if you are not committed to the mission and seeing it through.
Secretary
This person will ensure that board members are given appropriate notice of meetings and proactively record these meetings.
The Secretary:
- Assures that an agenda has been prepared by the board president and that the agenda is distributed in advance of the meeting
- Oversees the distribution of background information for agenda items to be discussed
- Prepares the official minutes of the meeting and records motions, discussions, votes, and decisions
- Prepares and provides the previous meeting’s written minutes to board members before the next meeting and records any changes or corrections
- Assures that documents (bylaws, Form-990, roster of board members) are are accessible to members
- Schedules and notifies board members of upcoming meetings
- Holds members accountable for their tasks
This person has to be on top of every task, which also means they need a fluid set of skills. Some desirable qualities for this position include strong communication skills and the ability to organize and prioritize tasks. This extremely driven and detail-oriented individual should also be well-versed in administrative work.
Treasurer
This person will be dealing with the organization’s finances and making important decisions regarding spending and investing. This role is a demanding and engaging one, with a lot of responsibility and opportunity to initiate change.
The Treasurer:
- Presents at board meetings
- Ensures tax-related documents and legal forms are filed on time, such as the documents required to maintain the organization’s tax-exempt status
- Manages the board’s review of and action on its financial responsibilities
- Assists the President in preparing the annual budget and presenting it to the board for approval
- Reviews the annual audit and answers board members’ questions
Someone experienced in bookkeeping or accounting needed, nonprofit accounting preferred but not necessary.
Non-Executive Members
These members will assist where needed in committees as the organization needs. This may include but is not limited to organizing fundraising events, marketing plans, or researching needed information.