Celebrate Hope Foundation is proud to announce a new charitable event, Hiking Camino de Santiago For a Cure. Al DeCesaris, Jenna Heck’s uncle, is once again pushing his physical boundaries for those living with Sturge-Weber Syndrome (SWS). Jenna is a beautiful 13-year-old living with SWS and the inspiration for Al’s dedication to fight for all SWS families. This will be Al’s third endeavor for the cause. In his first journey, Crossing America For A Cure, Al biked across the U.S. covering 3,088 miles in 45 days. His second journey, Running The Coast For A Cure, had Al running down the East Coast from Maine to Florida covering 1,935 miles over 93 days.
Hiking Camino de Santiago For A Cure will have this amazing man hiking the famous Camino de Santiago route in Spain. Al will hike roughly 18 miles per day for 31 consecutive days, covering 555 miles. Through his efforts, Al will create awareness and raise funds for the advanced medical research being conducted by Dr. Anne Comi at the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute in Baltimore, Maryland. Anne Comi is a world leader in SWS research. In May 2013, Dr. Comi, along with Dr. Jonathan Pevsner, Dr. Douglas Marchuk, and other collaborators, discovered the cause of SWS.
This rare disease does not distinguish between nationalities or geographical boundaries. Al’s hope is to connect those born with Sturge-Weber from around the world. He has added a special element to this challenging event – each day of his journey will be dedicated to a person living with SWS. Celebrate Hope Foundation has teamed up with the Asociación Española Síndrome de Sturge Weber to highlight personal SWS stories. These stories can be found on our website and will be incorporated in all our social media. Throughout the hike, YouTube videos, updates and photos will be posted. Follow Al’s journey at @celebratehopefoundation on YouTube, Facebook, and Instagram.
Your support is vital to the success of this event! Each dollar you donate will go directly to ongoing medical research. You can make a difference.