Fundraising Overview

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.

The Smith-Lemli-Opitz Foundation is the only organization worldwide committed to helping families, professionals, and individuals dealing with Smith-Lemli-Opitz syndrome. This is done through information exchange, support for family contact, newsletters, bi-annual 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.

Volunteers, which include the organization’s own Officers and Board of Directors, are heavily relied upon and are our most valuable asset. For without the extreme generosity of your time, resources, and talents, we would not be where we are today. We extend our sincere thanks and gratitude for your charity, hard work, and unwavering support. The SLO Foundation also recognizes the desire of those who, as volunteers, want to do as much as possible and become more involved to further the cause in searching for treatments and a cure. For this, we greatly appreciate your selfless contributions and dedication.

The SLO 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 SLO Foundation. Please do not hesitate to contact us with any questions. We look forward to working with you on your event(s).

Before you start, what you should know about fundraising for a non-profit organization:

  • There are over 1.5 million charities in the United States, and charities are the fastest growing population of organizations.
  • 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 SLO 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 no exceptions to these rules.

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.

What to do if you would like to hold a fundraiser:

  • Contact us at to discuss the proposed event.
  • Check to see if the SLO/RSH Foundation is registered in your state.
  • Obtain our fundraising guidelines.
  • Obtain written permission to use the SLO/RSH Foundation’s name and logo.
  • Sign and date a fundraising event agreement.

Keep in mind fundraising should be fun and informative. Fundraising is one of the best ways to spread the word that this syndrome exists and that help in providing funds for research is desperately needed.