From the Foundation

Non-Profit Status Update

It is with great excitement we share with you that our organization, The White Sutton Syndrome (WHSUS) Foundation, is now an official 501(c)(3) organization!

What does this mean?

This means that the WHSUS Foundation is now a non-profit organization that the Internal Revenue Service (IRS) recognizes as exempt from federal taxes. In addition, it means we are no longer limited in the monetary donation amount that we can accept.

What does this mean for our organization as a whole?

With our 501(c)(3) status secured, we are now able to expand our efforts to effectively impact more people. We expect that expansion to include everything from conferences and possible fundraisers to new international positions. As we actively seek continual growth, we still remain committed to our mission to “build a community that will improve the quality of life for those diagnosed with White Sutton Syndrome and their families, to educate others about this condition and to fund research in order to better understand its symptoms, treatments, and prognosis.”

Contained in that mission is the goal of providing education and promoting awareness. This includes educating not only those who are part of our organization but people worldwide as well. In order to be an effective, impactful, global organization, we must actively seek to uphold our mission. This means keeping our families and those impacted by White Sutton Syndrome at the forefront and top of mind.

We recognize that those diagnosed with White Sutton Syndrome and the communities that care for them are constantly growing too, creating an ever more diverse population affected by this condition. As we grow, it is our responsibility as an organization to be versatile, responding and adapting accordingly, appropriately representing those whom we serve as a foundation. With that being said, we want to let you know that we are intentionally and thoughtfully planning to embody and embrace this growth.

New Positions Are Coming!

We will soon announce several new WHSUS Foundation positions, all of which will be essential but initially will be voluntary and unpaid.

  1. Volunteer Country Ambassadors – These positions will ensure that every country has a voice and that we are able to unify and collaborate with each other.
  2. New Board Member(s) – We will be seeking at least one new person to serve as a voting member on our board. Existing board members will vote on any nominees.
  3. Volunteer Major Gifts Coordinator – This position will be responsible for the expansion of the organization through seeking significant annual and major gifts.

Be on the lookout for these and other available volunteer positions and future events to be posted. No matter where you are located, we encourage you to apply! We believe that continuing to diversify will further grow our foundation’s effectiveness and improve the impact of our work in meaningful and beneficial ways.

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