Yaya Foundation Executive Director Community Update

Yaya Foundation co-Founder and Board President Ron Garber and Yaya Foundation Executive Director Ben Smith pose for a picture with Jill Triptow at the fun Fore for 4H Event in Ohio!

Yaya Foundation Executive Director Ben Smith gives his thoughts after spending 90+ days with the organization. Read on to learn more about his experiences, insights, and next steps for the Foundation!

It seems like this journey for me began just yesterday.  How is it possible that we have completed our first 90 days together and then some?  I am incredibly grateful for the warm welcome, each introduction, personal stories and grace.  I am inspired and committed to ensure the Yaya Foundation is positioned to deliver for our patients and families and be a leader across the rare disease landscape, support the researchers and clinicians who continue to discover, and meet you where you are in this time of great support and community.  As I reflect on my time here so far, I share the following highlights:

  • As a team, one of our first objectives together was to envision, design and execute a scientific and family conference. A heavy lift in a short amount of time. The result of time, creativity, partnerships and diligence is profound.  We are proud and energized to execute. On October 13 and 14th, Philadelphia will serve as host to our community – the city of love, compassion, hope – be there.
  • The United Leukodystrophy (ULF) Conference in June provided me with great access and introductions to families, the science community, and patient advocacy champions. It validated every reason why I chose to step into this role and serve.  The shared passion to do what is needed to discover therapies and cures is evident in science posters, research panels, around the dining tables, through networking – a community showing up to learn and do what we can to move the work forward.
  • There are many vital people who have been a part of the inspired history and foundation of the Yaya Foundation. As the Executive Director of this instrumental resource for research support and hope, it was important to me to mark this landmark 5th year – we have come so far.  In September in Minneapolis-St. Paul donors, partners, stakeholders and community prospects will gather to celebrate all that we have done and toast our shared commitment to even greater successes to come.
  • Shannon Healey recently stepped into a new role – Director of Institutional Engagement. The focus of her work and leadership will be on managing the cross functional ways our messaging, family engagement and fundraising align – the holistic work of ensuring continuity in our external work.  This work is critical and complementary, as my capacity in the near term will be in Board of Director/Stakeholder strategy and leadership, corporate and major gift fundraising, partnership with Valerie Greger, Director of Research, in executing our research roadmap and the macro foundation engagement and fundraising events.

This is not an exhaustive list, but one that illustrates common purpose, collective energy, dedication – infinite possibilities.  Never quick enough.  Never enough.  For me, however, seeing what has been accomplished and the soaring energy to do more will continue to motivate the Yaya Foundation to always maximize what we have to show up and dig in.

Many young organizations do not make it to five years – they lose direction, resource, inspiration – the Yaya Foundation did because of each of you.  This truth is one of the first things I recognized about this community.

There is so much more to do – we will be strategic and organized, lean into each of you to expand our capacities, and we will ask you to show up for us just as we will for you – count me in!



P.S. One constant request I have heard throughout my conversations is to increase my/our visibility and access to our community.  Please note the following ways I have identified to help achieve this:

  1. Executive Director Office Hour: One the first Monday of each month I will hold a virtual office hour to have casual conversations, introductions, answer questions. Please look for these announcements, links to attend, etc.
  2. Attend our Yaya Foundation #4HLFamilies Calls and use this time to raise questions or concerns, topics of interest, or provide suggestions.
  3. Currently I am working alongside our Board of Directors leadership to strengthen our structure and capacity to include more opportunities for service and engagement – look for further communications and consider ways in which you may want to change your proximity to our mission and become more involved.
  4. Email me: Ben@yayafoundation4hl.org – please ask for time to connect!
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