Robert Rauner

Dear Friends and Supporters of the United Leukodystrophy Foundation, 

As the President of the ULF I am excited to talk to you about the many changes that are taking place as we build the future of the Foundation. In the past year, we’ve added seven new members to our board of directors. These new additions have helped enable us to move forward to develop a new long term plan for the foundation. We are thrilled to unveil our newly redesigned website with a fresher take of our logo which we feel better encompasses our mission and the community that we represent. We have spent a lot of time to make our website more user friendly and improve navigation to make resources more easily accessible. 

We have reworked our mission statement to reflect our new goals for the future, and we share our visions with you that includes five belief statements to elaborate our objectives. These beliefs help us build the community support pillars of infrastructure, medical, and patient support. In the coming months, we will be looking at the areas where our staff can grow and continue to build the infrastructure of the organization. Increased staffing will allow us to support expanded medical research initiatives, patient resources, and collaboration between patient advocacy groups. We welcome your feedback and invite you to communicate with us on what we could be doing to provide more meaningful and valuable resources to the leukodystrophy community. Our ever present commitment is to you – our constituents – and we rely on your feedback to guide us. 

New partnerships are allowing us to increase the visibility of leukodystrophy awareness, and the need of having patients involved in the research and treatment development processes. Patient involvement is hugely important and we are dedicated to bringing patients and caregivers together with the medical community to facilitate these kinds of conversations. 

A few sneak peeks of projects that are on our roadmap for the future: newly diagnosed resources, connection network ambassadors, and expanding resources for our partner patient advocacy groups. We hope to be a resource for families regardless of where they are in their leukodystrophy journey – from the beginning of the diagnosis process through longevity and quality of life. Expanding our caregiver resources is very important as we emphasize the importance of the health of the entire family, including mental health and emotional support resources. The leukodystrophy community fights the same battle, and the ULF strives to bring patient advocacy groups into collaboration so that by working together, we can make an even greater impact. Finding the cure is the answer; working together is the first step. 

The ULF is poised to make huge forward movement with the leukodystrophy community in the coming years, and we can only make this dream a reality with your help. Please reach out to us! We welcome your questions and feedback because it helps us stay on track. Thank you for being a part of the ULF community. 

Robert Rauner

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