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Celebrating #NiemannPickChampions during Niemann-Pick Awareness Month

As we celebrate Niemann-Pick Awareness Month this October, the National Niemann-Pick Disease Foundation will use this important observation to highlight and recognize many of the significant accomplishments achieved by members of our community over the last year. We can take this opportunity to recognize so many of our “Niemann-Pick Champions,” including heroic efforts by patients, caregivers, researchers, clinicians, and advocates who have contributed to making a positive difference in many ways. Champions from our community have helped us make historic progress in research and efforts to build awareness. So many have joined in efforts to help others. Our Champions are reaffirming our commitment to fighting for more treatments and services to support ALL people impacted by ALL types of Niemann-Pick disease and are continuing the fight to make access to care possible for everyone living with Niemann Pick disease.

Over the past year, we have been so grateful to the patients and caregivers who have participated in meetings, shared their voices in webinars, posted information on social media, and interacted with local media and community leaders to make sure the needs of our community are being heard. Our Champions also include many dedicated clinicians and researchers who have continued to move research forward to help our community find more paths that can lead to new treatments. Every person who has advocated for our community in even the smallest way is Niemann-Pick Champion and we thank you for your continued support.

One of the greatest moments our community experienced this past year was the historic approval of a first ever treatment for ASMD in the U.S., Europe, and Japan. This landmark event is the result of years of dedication by so many stakeholders in industry as well patients, families, and other members of advocacy communities, and it shows what is possible when we join together in a common goal. We should all see this milestone not as an end, but as a beginning and a chance for renewed hope. All of our Champions know that there are many other members of our community who are still waiting on research to bring them a treatment. Working with Champions at every level, NNPDF remains dedicated to advocating for patients and caregivers and we will not stop until all people affected by all types of Niemann-Pick disease have access to the care they need.

Throughout October, we invite all of the members of this amazing community to join with NNPDF in recognizing and celebrating the #NiemannPickChampions in your life. Learn how to use our custom-designed template to tell the world about your Niemann-Pick Champion. Create your own social media profile frame to show your support. Visit our awareness month website page to learn more about how you can be an advocate and get involved.  We call our community leaders and dedicated individuals “Champions” because together we can win this battle and achieve our mission of bringing a future of better health and hope to every member of the Niemann-Pick disease community.

Supporting one another. Supporting our community.