News
112 from Alpha-1 liver community join teleconference to hear plans for Foundation's new Liver Initiative
A total of 112 people joined a teleconference call Wednesday evening to hear about the Foundation’s new Liver Initiative. They called in from Maine to California, Florida to Canada, and just about everywhere in between.
Alpha-1 Foundation President & CEO John Walsh was the speaker on the call, held as part of the Alpha-1 Association’s series for the Alpha-1 Families Virtual Support Group.
Walsh said the purpose of his talk was to “inform, educate and engage the Alpha-1 community’s help in expanding our liver initiative.”
He mentioned that in recent years there has been an alarming increase in lung-affected Alphas developing liver disease, including end- stage cirrhosis without prior symptoms.
John Walsh
This led to the Foundation’s Liver Initiative. Among the goals is expanded research, partnerships with the National Institutes of Health (NIH), and new clinical guidelines for healthcare professionals.
He said there is a greater need than ever for more patients to enroll in the Alpha-1 Foundation Research Registry. The Registry hopes eventually to allow physician-reported data to add to the current patient-reported information. This would allow researchers to have more information available for research studies.
Walsh said among the most-needed research is a study on the natural history of Alpha-1 liver disease.
A critical study being proposed to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is a five-year study that would provide for two liver biopsies of Alpha-1 volunteers. Anyone interested in volunteering for this study—or for any Alpha-1 research—should enroll in the Research Registry.
Jeff Teckman, MD, of the St. Louis University School of Medicine and chair of the Foundation’s new Liver Research Advisory Board, spoke briefly about his research.
Jeffrey H. Teckman, MD
The Foundation has funded nearly $39 million in research at more than 70 institutions in North America, Europe and Australia.
Among other points made on the call:
- The American Liver Foundation is no longer offering matching grants for Alpha-1 research, adding to the need for Alpha-1 Foundation liver research funding.
- No one is “automatically” registered in the Alpha-1 Research Registry. Only those who consent to provide their information and actually enroll themselves become a part of the Registry.
Two details mentioned on the call were incorrect:
- The Alpha- Research Registry encourages all those with Alpha-1 and Alpha-1 carriers to register, but cannot accept “MM” diagnoses, even as research controls.
- All Alphas and carriers are welcome to call the Registry toll-free at 1-877-886-2383, and can be mailed Registry membership applications, but registrations cannot be completed over the phone. You can email alphaone@musc.edu. For many, the easiest way to register is online at www.alphaoneregistry.org.
Foundation offers free fundraising training in Las Vegas
Anyone who would like to raise funds to support the Liver Initiative is invited to consider a Building Friends for a Cure (BFC) event.
The Foundation plans BFC training in Las Vegas in early December, for anyone who wants to hold a fundraising event. The Foundation covers travel and hotel costs.
Contact Angela McBride, director of development, at 1-888-825-7421, Ext. 233, or amcbride@alpha-1foundation.org.
