Ever Forward!

"Ever Forward, Never Straight!"

Catching up on changes at the Foundation.

A lot continues to happen, and it's about time that I catch up everyone. I'm writing today about personnel and board members: Who to contact, what roles are being filled, and what roles we are continuing to look for.

As part of our bylaws, approximately 1/3 of our board members change annually in order to keep fresh energy and ideas. Each board member is asked to serve 1 or 2 or 3 year terms with the Foundation.

So (with apologies for my delay) I want to sincerely thank and recognize the contributions of Sarah Bloom-Anderson, Karen Bennett, and Andy Dodds. They ended their rolls with the foundation at the end of the year.

Sarah was a founding member of the Foundation, instrumental in its initial formation and helped to usher through the legal formation and recognition of the non-profit status in the US, as well as serving as Secretary of the Board.

Karen served us as our initial parent liaison for US families, serving to directly fulfill a part of our mission to support our families. She was an early and welcoming contact for many of our families.

Andy was that guy on Youtube with the Scottish accent, taking on the roll of social media, our way of outreach and education for families, and reminding us all that we are not alone in the PURA and rare disease world.

Together these three helped us all in advancing the mission and successes of the Foundation in their own unique ways. And I want to say

Thank You! To each of you for your time and service, not just to the Foundation, but everyone within the PURA community.

So what happens now? We have recently interviewed and voted onto the board two new members, both parents, who we are excited to welcome and work with for the next three years!

Jon Erickson has an extensive history of serving on non-profit boards as well as an IT background. He's joining us from Massachusetts USA in a capacity to contribute to our IT organization and best practices within our non-profit peers.

Kerry Hildring is serving as our new US Parent Liaison. Kerry has had a life long passion for special needs services, growing up with an uncle in Iowa with Downs syndrome and teaches in the public school system serving special needs children and their parents.

A great BIG PURA WELCOME to both Jon and Kerry! We're glad you're here! Both of their official bios and contact information will be on our website in the coming days.

What else is there to do?

I'm glad you asked! If you are reading this, I want you to know: the Foundation continues to need your help.

We are a global organization striving to represent and serve a group of people who are as diverse as any group could be: All of us! We have a number of positions that are still open and we are looking for, specifically we need

  • a Secretary of the Board

  • a Vice President

  • a Social Media or Branding expert

And frankly, we must have more people on the board from outside of the US.

We have recently passed a budget that includes money to hire a professional search firm to help us with members from outside the US if we don't get a response soon. Board diversity is critical to the success of the Foundation and our continuing mission to support, educate, and research. We are a global community and need to look and act like one, not just say that we are one. So, if you have any thought about helping, even if it is not as a full member of the board, please contact me.

So what's with the sign?

I have to often remind myself of a family saying that I heard many years ago: Ever Forward, Never Straight. This summarizes a great many experiences in my personal life, but it is also something that I observe in my professional career as an architect, as well as contributing to the PURA Syndrome Foundation. Ever Forward, Never Straight has helped remind me that our paths in life are unpredictable and full of things we don't anticipate, our own personal curves in the road. It reminds me of the importance of keeping our eye on our goals, the destination, and if we can keep a focus on our goals: we will get there. Often by routes unknown and unexpected, but we will get there. So to for the PURA Syndrome Foundation and our mission: Support, Educate, Research. We ARE getting there!!!


Dominic J. Spadafore

President, PURA Syndrome Foundation.