Be The Story – Story Submission Page Krabbe Disease “Be the Story” Project Name(s) of Caregiver(s)(Required) First Last Email Address(Required) Photo(Required) Drop files here or Select files Accepted file types: gif, jpg, png, Max. file size: 10 MB, Max. files: 3. Please provide a high-resolution photo of your loved one impacted by Krabbe disease.About Your Affected IndividualPlease enter the details for your affected individual. If you have additional affected individuals you will have the option to add them later. Name of affected individual(Required)Please enter the name and details for your affected individuals. If there is more than one affected individual in your family, you can add their information below. First Last What year was your affected individual born?(Required) State of Residence(Required) Date of Diagnosis(Required) Month Day Year What are some of your loved one's favorite activities?Explain your diagnostic journeyIf applicable, when did your affected individual pass away? How old were they? Has your story been written or shared somewhere before? If so, please include either a link or copy/paste the story so we can potentially use it. Was your individual identified through Newborn Screening?(Required) Yes No Newborn Screening DiagnosisIn which state was your affected child born? How were you notified of the Newborn Screening results? How did you feel about that conversation? What could have gone better? Did you feel supported?What treatment options were given to you?: Stem Cell Transplant Gene Therapy Clinical Trial None Other What treatment did your child receive? Where did the treatment happen? How do you view Newborn Screening after experiencing diagnosis through it firsthand?Traditional Krabbe DiagnosisAt what age (months and/or years) was your child diagnosed with Krabbe Disease? Thinking back to Diagnosis Day, what do you remember about how the news was delivered? Who delivered the news? Tell us whatever you'd like about that experience.What impact would Newborn Screening for Krabbe have had on your family's life?