Here are a few SWF-recommended books that will help spread awareness and acceptance, and inspire you!
The Warrior Mama: Tidbits and Tales from the Trails by Karen Fisher Ball, SWF Founder, and CEO
When Karen's daughter was diagnosed at birth with SWS, few resources were available for families and caregivers. No support groups, guidebooks, websites, or even brochures on the complexities of this unique condition. A guide to living with SWS simply did not exist. In fact, many medical practitioners had no experience with diagnosing or treating children with SWS.
Inspired by faith and driven by determination, Karen blazed her own trail and created the Sturge-Weber Foundation to battle SWS. She embarked on a fundraising and research journey through the medical community and the pharmaceutical industry that has helped people worldwide.
Sturge-Weber Syndrome 2nd Revised ed. Edition
by John B. Bodensteiner (Editor), E. Steve MD Roach (Editor)
Sturge-Weber syndrome is an enigmatic disorder, seldom difficult to diagnose but often difficult to treat. This book consolidates what is known about the Sturge-Weber syndrome in the hope that this information will be useful in the care of patients and serve as a stimulus to encourage research on some of the remaining questions about the syndrome. This book is the 2nd Edition.
Two Sides of a Face: My Journey with Sturge-Weber syndrome
June, 2024
Chelsey Peat shares her life story with a facial difference caused by Sturge Weber syndrome. Her memoir begins with early years marked by health challenges, brain surgery, and the curiosity of strangers. As she grows, curiosity turns into cruel taunts from peers, highlighting the harsh realities of being visibly different.
Chelsey's journey includes key moments like deciding to stop treatments for her birthmark and navigating adolescence filled with pain, insecurity, and empowerment. These experiences shape her transformation towards self-acceptance and self-love amid societal beauty biases. As an adult, Chelsey breaks barriers: she finds love, marries, pursues higher education, and has children. However, bullying in her administrative career leads her to public advocacy. Drawing from personal experiences, Chelsey fosters dialogue about inclusivity and stigmatization of physical differences through her volunteer work.
Follow Chelsea on Instagram @chelseypeat and Facebook @chelsey.peat.
Live Like a Guide Dog: True Stories from a Blind Man and His Dog...
August, 2024
Michael Hingson’s inspiring true story captivated the world when he and his guide dog Roselle escaped the Twin Towers together on 9/11, a story that became the New York Times bestselling book Thunder Dog. During decades of walking with guide dogs, he had learned a surprising truth that helped save his life that day: Being afraid can be a positive thing, one that prepares us to deal with any situation that befalls us. Now, in Live Like a Guide Dog, he reveals how to:
- Get equipped for whatever obstacles or challenges you may encounter as you make your way through the world
- Train yourself to be brave, just like a guide dog’s training equips handler and dog to prepare for the unexpected
- Learn to use your natural fear reactions as a way to focus and concentrate to make better decisions and turn your fear into courage and confidence.
- Apply eleven principles Michael has learned with his guide dogs to overcome the fears that you face every day
Join Michael on the joyful adventure of walking with, loving, and learning from guide dogs!
Michael is Chief Vision Officer at AccessiBe and hosts a podcast called "Unstoppable Mindset".
Beautifully Blemished children's book by Leanne Stuckey
Whether it's a birthmark, eczema, vitiligo, moles, scars, or other visible markings; it can be difficult to find the beauty in being different. Beautifully Blemished: Learning and Celebrating Skin Differences is a children's book that encourages children to see the unmatched beauty in their imperfections and provides an understanding of various skin conditions.
Having grown up with a visible skin difference, I understand the feelings of insecurity that come along with that reality. This book was written to help kids truly recognize the beauty in their uniqueness—hopefully much sooner than I did. The goal is to empower young boys & girls while spreading awareness and helping to shift society’s narrative of what beauty is and what it looks like.
Follow on Instagram @beautifullyblemished365 and Facebook @beautifullyblemished365
Jaylon's Story: Living with Sturge-Weber Syndrome by Dietra Fleming
This story was meant to bring awareness to Sturge-Weber syndrome.
Our son Jaylon was diagnosed with Sturge-Weber when he was just four months old. At the time, we had never heard of Sturge-Weber, so it was pretty scary in the beginning. However, over the years, Jaylon has had some hurdles to overcome, but he is doing really well now. I hope that this book will inspire anyone dealing with any type of disorder to always think positively because they are amazing in every way!
“Falling Off the Chair at Logan Airport” is Zia Zaman's latest work, a combination memoir and parenting book that defies traditional genre stereotypes. It is the life story of a little boy with Sturge-Weber Syndrome told from the perspective of the father. As a book that helps other parents, caregivers, and health care professionals understand more about this particular orphan disease, it will strike an unusual chord as it is written from an analytical, left-brain perspective that most authors do not explore in their quest for answers. Also, as a memoir, it investigates the cycle of grief-analysis-acceptance delving into the concept of uncertainty and how much we as humans can and cannot do to control the big and little things in our children’s lives"
An extraordinary and inspirational journey to make a difference!
In 2014, Al DeCesaris set out on a 1,935-mile solo run from Lubec, Maine to Key Largo, Florida. He ran to bring hope to his 10-year-old niece Jenna who suffers from Sturge-Weber Syndrome, a rare and life-threatening neurological disorder. He ran to create awareness and raise funds for medical research so a cure can be found.
