Amanda's Story

Follow the journey of Amanda and her husband, Bradley, as they fight to have children free of the gene that causes Gerstmann-Straussler-Scheinker disease, a prion disease that has "stalked her family for generations."

Quotes from Amanda's July 2016 presentation at the CJD Foundation Family Conference:

"At the age of 26, I was handed a death sentence. I was instantly faced with making decisions about my life I never imagined I would have to make, let alone at such a young age."

"Doing (In-Vitro Fertilization with Pre-Implantation Genetic Diagnosis) gave me a purpose. It gave me back some of that sense of power that I lost because I was actually doing something to beat GSS at its own game."

"I find comfort in the fact that, as far as my family is concerned, this monster of a disease ends with me."

To watch Amanda's presentation at our 2016 Family Workshop, click here or on the PLAY button above.

Click here to watch "Making a Difference: My Story and My Mission," a short film featuring Amanda Baxley Kalinsky, Trevor Baierl, and Sonia Vallabh & Eric Minikel, from the 2016 Family Conference.


On The Bookshelf
Coming to bookstores March 21, 2017: The new book about Amanda and her family from New York Times Bestselling Author Gina Kolata, "Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them."

* Follow this link to order "Mercies in Disguise" through Amazon Smile, and the CJD Foundation will receive a percentage of the purchase price. Thank you for believing in us and for caring about our work.

* Click here for a book excerpt, published in the March 16, 2017 edition of the Atlanta Journal Constitution.


* If you'd like to make a contribution to our new Mercies in Disguise Research Grant, click here.


In The News
To read an article about Amanda and her family, written by acclaimed New York Times science reporter and bestselling author Gina Kolata, from the Feb. 4, 2014 edition of the New York Times, click here.

* Read why the Baxley family shared their difficult and personal story in the March 20, 2017 online New York Times.

* Read Susan Okie's book review from the March 31, 2017 edition of The Washington Post.


On The Small Screen
To watch a video segment from "CBS This Morning" featuring Amanda's family, click here.

Gina and Amanda participated in a book reading and signing March 28, 2017, at the Barnes & Noble store in New York City. It was covered by C-SPAN2, and you can watch it here.



Radio Interviews with Author Gina Kolata
March 21, 2017: The "Top of Mind with Julie Rose" show on BYU Radio, from Brigham Young University here (around the 52-minute mark.)

March 23, 2017: Frankie Boyer's "Lifestyle" show on the national Business Talk Radio Network. Listen to the podcast.

March 23, 2017: WILS-AM, a news/talk station in Lansing, Mich. Stream it online.

March 28, 2017: 77 WABC Radio, "The Joan Hamburg Show" Listen here.

April 19, 2017: WNYC Radio, "The Brian Lehrer Show" Check out the link now.