By Geoff Maleman
Greg Crawford, dean of the College of Science of Notre Dame University, is kicking off his Fourth Annual Road to Discovery bike ride.
Each year, he bikes across the United States to raise awareness and research funds for Neimann Pick Type C disease – a rare genetic, disease primarily affecting children for which no known cure exists. Children with NP-C rarely live into their teenage years.
This year, Crawford will begin in Long Beach and finish his bike journey in Baltimore.
On Wednesday, June 26, from 2 to 3:30 p.m., Crawford will be at the Leoni family house in Westchester to meet with Jessica Leoni, who is afflicted with NP-C.
The community is invited to the Leoni house at 6061 W. 75th St. in Westchester to show support for Crawford.
Leoni will be 16 years old on July 6.
“Her gentle spirit, deep faith in God, love for life, and for everyone manifested itself early,” said her father, Anthony Leoni. “From the time she was a toddler, her eyes, beautiful smile and warm giggles spoke all of these beautiful things. When Jessica was about eight months old she was diagnosed with Niemann-Pick Type C disease. The onset of severe NP-C symptoms began in May of 2005.
“Our hope for Jessica and all children with NP-C is that there will be an end to this terrible disease and the smiles, laughter and dancing be restored by a cure. Jess lost speech when her symptoms became severe. The last words Mom heard Jess say were, ‘Do Good, Do Good, Do Good.’ We would like to give our heartfelt gratitude to all the researchers, scientists and any person who has chosen to ‘Do Good’ for Niemann-Pick Type C.”
Please join Jessica Leoni and friends in cheering on Crawford and continuing the fight to cure NP-C.
For more information, Anthony Leoni at firstname.lastname@example.org.
CRUISE ‘N’ BREWS
Join the LAX Coastal Young Professionals for a Craft Beer Festival aboard Hornblower’s 550-passenger yacht, The Entertainer, where visitors can sample some of the finest craft beers available from 40 different breweries.
The event will be held from noon to 4 p.m. Saturday, June 22. Boarding is at the yacht at Fisherman Village – Hornblower Cruises, 13755 Fiji Way in Marina del Rey. The ship sets sail at 12:30 p.m.
Admission is $50 per person, and visitors must be 21 and older to attend. Only 350 tickets will be sold. To reserve a spot, (310) 645-5151.
The festival is held on opening day of the Marina del Rey WaterBus, which stops at eight boarding locations. Pretzel necklaces will be included with admission, and additional food will be available for purchase at the event.