Welcome to 2024, we hope that you and your family have kicked off the new year with good health and happiness!   Our spring newsletter will highlight some of the amazing activities of our community already this year and provide you with a look at what we are focused on for 2024.  Make sure you read about the incredible fundraising efforts of the Finch Family and also see one of our own Julia Richardson speaking on behalf of our community with the FDA on the importance of key medications that help support and sustain our community. These are critical activities of the foundation that help each of us live a normal life which for our community is extraordinary.

I’d like to call your attention to the Job Description as we take a big step forward in our foundation history hiring a part time Executive Director (ED).  As the organization grows and speaking with other foundations of our size, it’s time for our community to take a critical step in hiring an ED to support the many efforts of the foundation as we continue our work strategically as a foundation.  We have already met with some wonderfully talented individuals with significant non-profit expertise.  We selected a few candidates that we will be moving forward with this month so we hopefully find a candidate by the end of April.  You can see in the job description the many areas of focus that include strategic planning, fundraising, grant writing, and multiple managerial activities that will improve the foundations capabilities and better support all of you.  We will start part time with the hope that this position will self-fund itself to full time in the future if needed.   This board is amazing and works tirelessly to support our community and the time has come to enhance their work with an individual who will guide us as we move past our 10th anniversary as a foundation this year and continue to support our long standing commitment and vision to drive awareness, education and fundraising for a cure! More to come on this role so stay tuned!  

Finally, I’d like to thank Tina Park and The Park Group for their support over the last three years.   I know many of you have met Tina and her Team at past symposia and they have been instrumental in preparing us to move to the new ED role in 24.  Tina’s team has been a driving force to support our last two symposia and our clinical symposium two years ago.  We thank The Park Group for all your help and support and being such an amazing partner.   We wish you all continued success! 

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