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ALGSA Statement in Response to Shire's Report on Topline Results Placebo-Controlled Phase 2 Studies of SHP625 (LUM001) in Children with Alagille Syndrome


April 9, 2015- The Alagille Syndrome Alliance (ALGSA) applauds the efforts of Shire and other pharmaceutical companies who choose to invest their time and resources into developing therapies for Alagille Syndrome (ALGS). Shire’s 13-week Phase 2 IMAGO trial in the United Kingdom (UK) is one component of a comprehensive, multinational study on SHP625 (LUM001) and the insights produced by this study will continue to shed additional light on ALGS. We appreciate the efforts of Shire’s Head of Research and Development, Philip J. Vickers, Ph.D., and his team who reached out to the ALGS community to better understand the day-to-day experience of living with this complex rare genetic disease. Shire has indicated ongoing commitment in studying ALGS and we encourage our community to continue participation in existing clinical trials. With your support and participation, we are confident that we will one day have access to new therapies that improve the quality of life for our ALGS community.

Additional information about study results is available here: http://www.shire.com/shireplc/en/media/shirenews?id=1088


Alagille Syndrome Alliance Announces Establishment of the
Alaina Kaitlyn Hahn Celebratory Scholarshi
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 The Alagille Syndrome Alliance (ALGSA), a nonprofit organization dedicated to furthering awareness and understanding of Alagille Syndrome, announces the establishment of the Alaina Kaitlyn Hahn Celebratory Scholarship. The scholarship celebrates the legacy and impact of Alaina Kaitlyn Hahn, who passed away on January 15, 2015, due to complications from Alagille Syndrome, a rare genetic condition affecting 1 in 35,000 individuals. Alaina is the daughter of ALGSA Founder and CEO Cindy Luxhoj Hahn and is remembered for her inspiring contributions to Alagille awareness through her art and jewelry as well as unending leadership within the Alagille community.

 There was an amazing outpouring of support from Alaina’s friends and family along with the Alagille community, many of them making contributions to the ALGSA in Alaina’s memory,” said Anna Chow, ALGSA Board President. “The Board of Directors decided the best use of these funds would be the establishment of a scholarship fund that would celebrate Alaina’s aspirations and goals.” After receiving her Bachelor’s degree in Human Physiology from University of Oregon in 2013, Alaina planned to pursue certification as an Orthotics and Prosthetics (O&P) Technician and then obtain her Master’s in O&P at the University of Washington. She hoped to one day operate her own O&P clinic for children with limb loss. Scholarship funds will be used to support students with Alagille Syndrome who choose to pursue education in the health sciences.

“As someone who overcame obstacles to pursue higher education and live a life full of laughter and love, Alaina was a remarkable inspiration to the Alagille and rare disease community,” noted Roberta Smith, ALGSA Communications Chair. “The Alliance wants to remember Alaina by supporting other young adults as they pursue their dreams.” 

During their February 2015 annual meeting, the ALGSA Board of Directors also elected to posthumously appoint Alaina as Board Member Emeritus in recognition of her considerable impact in promoting understanding and awareness of Alagille Syndrome. At the same meeting, the board also voted to further honor Alaina’s legacy through the establishment of a Junior Board Member position that recognizes the vital role young adults such as Alaina can play in rare disease awareness and advocacy. Scholarship applications and funding guidelines will be released in late 2015. Individuals interested in donating to the Alaina Kaitlyn Hahn Celebratory Scholarship may do so via the ALGSA’s website at www.alagille.org or by ">contacting the ALGSA.

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The information presented on this web site is provided for information purposes only. This information does not constitute medical advice and it should not be relied upon as such. The Alagille Syndrome Alliance does not engage in the practice of medicine. Under no circumstances, does the Alagille SyndromeAlliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuingany course of treatment. 

The information presented on this website is provided for information purposes only.  This information does not constitute medical advice and it should not be relied upon as such.  The Alagille Syndrome Alliance does not engage in the practice of medicine.  Under no circumstances does the Alagille Syndrome Alliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuing any course of treatment.

 

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