Latest Links4Life Available for Download
The latest issue of Links4Life is now available for download in PDF format. The issue is highlighted by a report for the ALGSA board of directors and information about the Alaina Kaitlyn Hahn Celebratory Scholarship along with lots of other cool items. Check it out now!
Two Action Alerts: Scholarship Opportunity and Sharing Your Story with a Medical Student
Shire is now accepting applications for the Shire ACES scholarship program. If you are a recent high school graduate, expect to graduate high school by July 1, 2015, or are a GED credential recipient with a rare disease including ALGS, Shire invites you to apply for the Shire ACES (Award for Collegiate Education from Shire) Scholarship. For more information: http://www.shireaces.com/.
Raise awarness about ALGS by working with a medical student participating in the Cox Prize for Rare Compassion program. In preparation for a submission for the David R. Cox Prize for Rare Compassion, students in their first or second year of medical school are required to forge a relationship with a patient, family, or advocate affected by a rare or neglected disease in order to write about the experience, or to write about an experience with a patient with a rare or neglected disease that has occurred within the last 12 months with which the student has had no previous connection. This is a great opportunity to raise awareness about ALGS. The family participation request form is available here: http://globalgenes.org/cox-prize-family/.
Stacking the Odds for ALGS
The Alagille Syndrome Alliance (ALGSA) invites you to join us as we Stack the Odds for ALGS in May 2015! This month-long initiative increases awareness for ALGS and generates funds for ALGSA programs and research.
How to Participate
Build something! Make a stack of cookies, blocks, rocks…whatever you have within arm’s reach!
Take a picture and post it to social media, including the ALGSA’s Facebook page and Twitter. Be sure to add the #StackingTheOddsforALGS hashtag!
CHALLENGE others to match your stack or build something taller.
Encourage challengers to stack and then donate to the ALGSA at www.alagille.org. Donations can be made via a flat sum or you can make it even more fun by encouraging fellow stackers to donate based on the number of items they stack! How about $1.00 per Oreo? Or $5.00 per brick!
We thank you for your role in stacking the odds in our favor! Your support will help us develop new programs and invest in research initiatives.
About the Alagille Syndrome Alliance
For over 20 years, Alagille Syndrome Alliance (ALGSA) has been the global voice for Alagille Syndrome (ALGS), a rare autosomal dominant inherited disorder. ALGS occurs in just 1 in 35,000 individuals and is a devastating disease affecting most of the major organ systems in the body to varying degrees. Our efforts have led to greater understanding, significant increase in research, and growth of a supportive community of individuals with ALGS. Since our formation over two decades ago, we have formed a robust ALGS community, increased awareness of ALGS, and rallied the medical and research communities in support of finding novel treatments for ALGS. Our new 2015-2018 strategic plan calls for the development of new programs and services that support new ALGS families, increases opportunities for the ALGS community to connect in person, and increases our role within the research and medical networks.
New Information on Cerebrovascular Disease in Pediatric Patients with Alagille Syndrome
New information from Cincinnati Children's Hospital Medical Center and University of Cincinnati College Of Medicine sheds additional light on cerebral arterial vasculopathy in children and teens with ALGS. Click here to read the study abstract.
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 Scholarship
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.