We came home from the NIH study empowered with knowledge, tests, and research which essentially saved our daughter's vision.
Kayleigh & Nick
The Smith-Lemli-Opitz Foundation strives to maintain the highest level of integrity in our fundraising efforts, so we count on you to abide by the policies and regulations in place at the state, federal, and local levels as well as those put forth by the Foundation. Please do not hesitate to contact us with any questions. We look forward to working with you on your event(s).
The Smith-Lemli-Opitz Foundation is the only organization worldwide committed to helping families, professionals, and individuals living and engaging with Smith-Lemli-Opitz syndrome.
The Foundation does this through information exchange, support for family contact, biennial conferences, research grant funding, and more.
We rely solely on contributions and donations from various sources to support these efforts and through sincere effort in keeping operating costs at a bare minimum, nearly 100% of every donation goes directly to programs and services.
Fundraising efforts of all types and sizes raise funds AND awareness of Smith-Lemli-Opitz syndrome.
We are grateful for your support!
Carolyn's
Holding a fundraiser doesn’t have to be hard work.
Our family has held two fundraisers for the Smith-Lemli-Opitz Foundation at a local pub during a televised Philadelphia Eagles NFL Football game.
It started when I found out that the pub donates an official Eagles NFL jersey each Sunday in the fall to a local charity to raffle off.
We knew that one jersey wouldn’t bring in much, so we started asking friends and relatives if they would be willing to donate other items or create themed prize baskets. The response we received was overwhelming!
Everyone we asked was thrilled to donate a basket or their time to help organize. It is amazing to see how much support your family has in the community!
We printed flyers, put announcements on Facebook pages and spread the word. We had hundreds of people show up to watch the game and buy chances for the prizes. The first year we hosted the fundraiser, we raised almost $5000. The second year was even bigger and better with a signed Eagles jersey to auction and t-shirts to sell. The second year we raised over $8000.
And have I mentioned how many laughs, cheers and hugs we all had before during and after the event?
We definitely put the “fun” in fundraising.
SLOF Supporter
We often receive many questions about fundraising to benefit the Smith-Lemli-Opitz Foundation.
Here we attempt to answer all the questions you may have.
Keep in mind fundraising should be fun and informative.
Fundraising is one of the best ways to share Smith-Lemli-Opitz syndrome exists
and help in raising funds for research is desperately needed.
There are over 1.5 million charities in the United States, and charities are the fastest growing population of organizations. We appreciate your consideration of SLOF!
Even the smallest of fundraising events are becoming increasingly scrutinized by states to ensure consumer and donor protection.
States are required to regulate fundraising, and although each state has different statutes, all require the organization or event to register before the event is publicized.
Games of chance such as raffles, 50/50, bingo, etc. have additional regulations set forth by the gaming board in each state and may require additional fees and registrations. The SLO Foundation would prefer these types of events be avoided.
The Smith-Lemli-Opitz Foundation is required, by law, to register in any state in which fundraising or solicitation will be done for its benefit.
Any volunteer or event that uses the name of the SLO Foundation is subject to the same rules and regulations as the organization itself.
There are over 1.5 million charities in the United States, and charities are the fastest growing population of organizations. We appreciate your consideration of SLOF!
Even the smallest of fundraising events are becoming increasingly scrutinized by states to ensure consumer and donor protection.
States are required to regulate fundraising, and although each state has different statutes, all require the organization or event to register before the event is publicized.
Games of chance such as raffles, 50/50, bingo, etc. have additional regulations set forth by the gaming board in each state and may require additional fees and registrations. The SLO Foundation would prefer these types of events be avoided.
Any volunteer or event that uses the name of the SLO Foundation is subject to the same rules and regulations as the organization itself.
The Smith-Lemli-Opitz Foundation is required, by law, to register in any state in which fundraising or solicitation will be done for its benefit.
Failure to have the proper registrations in place will result in significant fines and serious penalties for both volunteers and the SLO Foundation. It could also result in the revocation of tax-exempt status and the good reputation of the SLO Foundation in the non-profit sector.
You are an organization that values health, family, and research.
Become our support partner by completing and submitting the information requested below.
Someone from our leadership team will connect with you soon.
Thank you for considering the support of the
Smith-Lemil-Opitz Foundation in your fundraising efforts!
Here is what you do.
Complete and submit the
Fundraiser Request Form below. After review, our Board will connect with you.
Verify the Smith-Lemli-Opitz Foundation is registered in your state. The Foundation's IRS 501(c)(3) ID is #23-2635206.
Obtain our fundraising guidelines.
We will email these to you upon review of your Fundraiser Request.
Obtain written permission to use the SLO Foundation's name and logo to promote your fundraising event.
After receiving approval from the Foundation, sign, date, and return the Fundraising Event Agreement to contact on the agreement.
After the fundraiser, report your success and we will guide you in the best way to submit the funds to the Foundation.
Complete and submit the information requested below.
Someone from our leadership team will connect with you soon.
Thank you for considering the support of the
Smith-Lemil-Opitz Foundation in your fundraising efforts!
We work worldwide to improve the quality of life for people with Smith-Lemli-Opitz syndrome through educating and supporting families, spreading SLOS awareness, and funding research into the disorder.
The Smith-Lemli-Opitz Foundation is a registered charitable organization. Donations are tax-exempt under IRS 501(c)(3), ID #23-2635206.