Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

Written by Valaree DonFrancesco on July 17, 2020

At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls

Taylor advocates for those living as… Carriers of all X-linked diseases

Taylor is located in… Mount Laurel, New Jersey

Taylor most frequently checks her… Twitter page

How Taylor got here… In 2001, when I was three-years-old, my dad… Read More

Patient/Caregiver Opening Address Announced for NORD Rare Summit

Written by Valaree DonFrancesco on September 5, 2018

One of the unique aspects of the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit is its theme, “A New Era of Patient-Focused Innovation,” which we will be examining from a variety of perspectives. Kicking off the Summit will be the Patient/Caregiver Opening Address featuring a panel of… Read More

Guest Blog: A Parent Advocate & Author Discusses Courage

Written by Jennifer Huron on July 16, 2015

By David Cry, Guest Blogger

David Cry Courage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. I have heard it in the words of mothers whose sons have been… Read More

Archives for: July 17th, 2020