At UCSF Children's Hospitals alone, 95% of AVM patients come in presenting with hemorrhage, or in these cases, bleeding into the brain. We know that the majority of these youngsters showed no previous symptoms and their families are faced with a terrifying emergency situation. Why? Approximately 50% of all hemorrhagic patients do not survive. Of those who do, over 65% have significant deficits. Time is brain; it can determine outcomes. Decisions are made quickly and more often than not patients (if conscious) and parents are disoriented, confused and overwhelmed with information.100% of pediatric aneurysm and AVM patients and their families tell The Aneurysm and AVM Foundation (TAAF) that they wish they knew someone like them, someone with the disease, to help them feel less alone in the recovery and survivor journey. At the exact same time, 100% of families (and even some older pediatric patients) tell us they wish they had solid, vetted information about the diseases sooner, information that they could turn to when away from their physicians or that they could direct loved ones to throughout a hospitalization and beyond.
We believe that the Write2Unite program addresses both of these wishes by connecting participants to others within the community while alerting them to the many resources available through TAAF itself. It's that bridge between the clinical side of what's happened and the support services side of what a family in crisis may need... and exactly what TAAF does. We serve.
What is Write2Unite?
Write2Unite is a modern day pen-pal program with a twist! Through social outreach--be it online platforms, in person or even snail mail--the Write2Unite program aims to connect pediatric aneurysm and AVM (arteriovenous malformation) patients and their families to other patients and families like them while simultaneously introducing them to the many resources TAAF can provide. Additionally, the program will work directly with UCSF Benioff Children's Hospitals (Mission Bay and Oakland) to provide this same outreach but in real time while families are at the facility.
The original idea for Write2Unite came from a TAAF Youth Ambassador working group led by Ambassadors Emalina Sanguinetti and Rachel Burdick. Later, when chatting with leaders of UCSF Children's Hospital, we realized the program could make an even bigger impact by involving clinicians, nurses and staff on the ground and by connecting parents and youth upon first meeting their neuro team.
How does it work?
Option One: Participants can submit this simple Google form. The form delivers pertinent information to our adult volunteers who then match current Write2Unite participants with their new "buddies" as well as a TAAF Youth Ambassadors. Ambassadors will then reach out personally informing participants of their buddy assignments as well as introducing themselves and building a rapport.
There are two ways that youth or families can connect through the Write2Unite program:
Options Two: Contact is made at the hospital level when hospital volunteers invite the patient and/or family to connect with the program. The volunteer will present the patient with a Write2Unite bracelet and parents will receive the Write2Unite Parent Pack, each being instructed to register online and encouraged to connect with families "who've been there."
Want to know more about the program, TAAF Youth Ambassadors or how to volunteer? Contact us at firstname.lastname@example.org.