Message from the President

Farewell Message from the President

Patricia Wood 

Patricia Wood


As I sit down to write this message, my heart is full. I feel the emotional tug of nostalgia and the rush of excitement about our future as I share with you my decision to step down as president of the NBIA Disorders Association. The journey I have taken these past 27 years feels like nothing short of extraordinary. And altogether unexpected.

I had no idea what was in store when I decided to start this nonprofit. I thought that after six months, I would go back to work full-time and do this work on the side. Little did I know that the NBIA Disorders Association would become my life’s work. Something that filled me with passion and made every day important.

Kimberly Wood 

My daughter, Kimberly Wood, who inspires me every day with her strength, positive attitude, and ever-ready smile.


The days, months and years flew by as each step of the journey helped prepare our community for the next one. We had our down times, but we never gave up. I remember one month that was especially hard; we lost five individuals in our NBIA community. I knew almost all the families and their children, some of them for years. I sat at my desk and cried each time I got the news, but then I would dry my tears and get back to work. That was the only way I could deal with the pain — by realizing this work could one day put an end to the suffering our NBIA families had to endure.


The sense of community and helping each other was what kept me going, along with us celebrating every victory as another step on the ladder to finding treatments for our loved ones. I will always treasure the friendships I have made, the hands that lifted me up and the unyielding support and trust you have placed in me throughout my tenure.


Seeing the organization grow into what it is today makes me happy. I am certain I can step aside as president and all will be well. Our organization is strong, resilient and essential. We have an amazing board of trustees, all volunteers who work hard to fulfill our mission. I will serve as a mentor to the incoming president, Amber Denton of Houston, offering guidance and support to ensure a seamless transition. Amber is fantastic and will bring fresh perspectives and invigorating ideas to carry our mission forward.


In the meantime, I will serve in a part-time position as our research program director. By continuing to nurture research initiatives and facilitating collaboration with experts in the field, we will sustain the momentum of progress in NBIA disorders research. I will also be working closely with our NBIA Alliance members around the world, collaborating on research initiatives and other ways we can strengthen our collective impact and amplify the voices of those who rely on our support.

As I reflect on the countless moments of inspiration and resilience that define our community, I am filled with hope for the future. I firmly believe that with each passing day, we come closer to a world where NBIA disorders no longer pose insurmountable obstacles. The spirit of unity and compassion that has been the bedrock of our association will undoubtedly continue to flourish, guiding us toward a brighter tomorrow.


As I step down, my heart is filled with gratitude to our board members, volunteers, researchers, health care professionals, donors and all who have contributed their time, expertise and love to the NBIA Disorders Association. It is your unwavering dedication that has made this organization what it is today.


Let us embrace the winds of change, knowing that they carry with them endless opportunities for growth and progress. Together, we will continue to make a profound difference in the lives of those affected by NBIA disorders, illuminating a path of hope and healing.

With heartfelt appreciation and unwavering commitment,



Outgoing President, NBIA Disorders Association


nbia alliance logo1NBIA Cure logoRare Disease Day PartnerRare ConnectTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes

Disclaimer    |     Privacy Policy    |     Financials    |     Contact Us

Give While You Shop!