Message from the President
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Amber Denton |
March 2024
Dear NBIA Community and Supporters,
Reflecting on my first six months as president, I am genuinely humbled by the opportunity to serve and learn from each of you. Connecting with new families and learning about each unique story is truly a gift. It is an experience that fills me with gratitude. Each new encounter brings fresh perspectives, shared laughter, and sometimes tears, but most importantly, it solidifies our organization’s purpose in supporting families on their NBIA journey.
Our recent celebration of Rare Disease Day was truly inspiring and nothing short of extraordinary. Through the incredible reach of social media, we were able to shine a spotlight on all NBIA disorders, showcasing the unique resilience and strength of our community. The beautiful images and stories of our NBIA zebras flooded timelines, touching hearts and minds across the globe while spreading our message far and wide. Additionally, as part of our campaign, we ensured our commitment to our global community by posting educational infographics in both English and Spanish, providing resources about each NBIA subtype.
As we continue our advocacy efforts, I am excited to begin planning our 13th International Family Conference. More than just an event, this conference embodies a celebration of our community — a gathering where we unite to learn, connect, and support one another. It's the perfect opportunity to reunite with old friends and welcome new members to our growing family with open arms. I remember the first conference my family attended. My husband and I swore we would never miss a single conference. It was a life-changing experience for both of us.
As evidenced in this very newsletter, our research program continues to thrive across many NBIA subtypes, thanks to the tireless efforts of our community and supporters. We are fast approaching the $3 million funded milestone and have achieved many groundbreaking discoveries, driving NBIA research forward at an urgent pace. This is an achievement we could not have reached without your continued dedication and support for one another.
I am deeply grateful for each and every one of you and the commitment we share to providing the best life possible for those living with NBIA.
With warmest regards,
President, NBIA Disorders Association
Farewell Message, President Sep. 1996 - Sep. 2023
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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.
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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
Welcome Message from the President
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Amber Denton |
October 1, 2023
Dear Families and Supporters of the NBIA Disorders Association,
Like so many of you, the journey that led me here was not one I could have anticipated. NBIA was never part of my life plan. However, when it unexpectedly enters your life and alters its course entirely, we face the challenge of navigating a future filled with fear and uncertainty.
In these moments, we grieve and take steps forward, only to find ourselves moving backward again. Yet, we persist. We lift ourselves from the floor and fight – a battle that feels as if our loved ones' lives depend on it. Because, in reality, they do. This is my purpose. I am committed to the fight alongside each and every one of you.
Guided by the strength of my sweet daughter Sydney and all of your loved ones, I am deeply honored and humbled to address you today as the new President of the NBIA Disorders Association.
It is with great respect and admiration for the outstanding work of Patricia Wood over the past 27 years that I step into this role. Patricia’s dedication and vision have laid a strong foundation for our organization, and I am committed to honoring her legacy by building upon the remarkable achievements of the past. Leading us into the future is a tremendous honor I am ready to embrace.
As we move into this new chapter together, I am filled with enthusiasm and determination. Our mission to support families affected by NBIA disorders, drive research efforts, and raise awareness remains at the core of our purpose. Our plans for the future are to make our organization stronger than ever.
We are gearing up to increase support throughout our ever-growing community, especially as new individuals get diagnosed every week. Dealing with an NBIA diagnosis comes with its own set of unique challenges. We plan to increase our support initiatives for caregivers and NBIA individuals. Mental health initiatives and continuing our International Family Conferences are a big part of that. Our caregivers and NBIA individuals are at the center of what we do, fueling our drive to make things better.
At the core of our initiatives is research. We will continue to collaborate with leading scientists and researchers across the globe, funding cutting-edge studies that bring us closer to understanding NBIA disorders and finding effective treatments. By investing in quality research, we not only enhance our knowledge but also offer hope to all families affected by NBIA. We also plan to expand our Centers of Excellence to guide our families to expert clinical care and research across the US.
Education and awareness will continue to be critical pillars of our future initiatives. We will expand our outreach efforts, organizing awareness campaigns, seminars, and workshops to educate the public, medical professionals, and policymakers about NBIA disorders. We will expand our global reach by increasing translation services for our international community members. Increasing global accessibility ensures that affected individuals receive the care and support they deserve no matter where they are in the world.
Collaboration will be fundamental to our success. We actively seek partnerships with other organizations, NBIA Alliance members, healthcare providers, industry leaders, and policymakers to amplify our impact. By working together, we can leverage resources, share knowledge and create a collective force for positive change.
The strength and resilience of our community inspire me. I am confident that, together, we can work towards a future where NBIA disorders are better understood, treated and ultimately cured.
I look forward to leading the NBIA Disorders Association into a new era of progress, compassion and hope.
With warmest regards,
