Amylynne Santiago Volker launches Nicholas Volker One in a Billion Foundation
Welcome to Nicholas Volker One in a Billion Foundation
Mission
To inspire the world to improve the quality of life for those with undiagnosed and rare disease by advancing the practice of personalized and genomic medicine.
Vision
A world in which every child survives and thrives.
Facebook pager: Nicholas Volker One in a Billion Foundation
To purchase the book on Amazon One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine
For more of Nic’s Journey: One In A Billion: A boy’s life, a medical mystery
Amylynne Santiago Volker Founder, Nicholas Volker One in a Billion Foundation Advisory Board Member, Rare & Undiagnosed Network Advocate for her son, Nic Volker Patient Advocate, Public Speaker, Charity Contributor As Nic battled a life-threatening, mysterious illness over the course of several years, it was in part Amylynne’s unrelenting pursuit of answers & tireless advocacy for her son that led to the historic sequencing of his DNA &, ultimately, the bone marrow transplant that saved his life. The Volker family lives in Monona, Wisconsin, where 9-year-old Nic continues to struggle with the far-ranging effects of his illness and recovery. In addition to caring for her family, Amylynne works to spread a message of fortitude & faith on issues pertaining to children’s health. She has spoken at such events as The MCW Digestive Disease Center 2011 Healthcare Dinner, w/ former First Lady Laura Bush, 2011/12 BioForward Conferences in WI, has been a guest speaker @ Roche Pharma meetings 2012/13 & participated as a panel member w/ the team of Pulitzer Prize Winning Journalists from the Milwaukee Journal Sentinel @ Wisconsin 2013 Newspaper Assoc. Associated Press Convention & Trade Show. She has also been a frequent contributor & speaker for events & radio-a-thons that benefit Ronald McDonald House Charities, CHW & Make A Wish, has appeared in several Capital Campaign fundraiser videos aired in movie theatres & on television in & around the Greater Milwaukee area. Amylynne & her son Nic have appeared on National TV including the Today Show, A syndicated medical show on ABC, PBS NOVA & Japanese Network Nippon( 2013), have been the subject of dozen’s of news articles around the world & most recently in U.S. World News Reports. Amylynne & Nic are featured in a E book on Rare Diseases (2/28/14) to help other families with sick children & a book being written about Amylynne and Nic’s historical medical journey will be published by Simon and Schuster.
