Dear Fellow PPA Member, It is with the greatest excitement that we share an incredible story with you!
Gabriel Low is a 17-year-old competitive triathlete, but not a typical one.Â A triathlon combines swimming, bicycling and running in rapid succession, and is not easy for anyone.Â He is currently in training for the USA Triathlon Nationals being held this August, with hopes of qualifying him for the World Championships being conducted in Switzerland next year.Â Â So, why is he an untypical world class athlete?Â Because he has had HKPP since he was six years old. Â Through a regimen of numerous medications and having a low salt, low sugar diet, he has been able to live a near-normal life, yet he still suffers from attacks.
Although never afraid to share the fact that he has periodic paralysis, his mission before the August race is to take a stronger stance as someone with a rare disease.Â How would you take such a position?Â Maybe organize a pp group meeting?Â Reach out to communicate to others with periodic paralysis?Â Both would be excellent choices, but Gabe is going much further, literally.Â You see, he is bicycling all the way from Seattle, Washington to Cleveland, Ohio (almost 3000 mi or 4828 km)!Â He leaves Seattle on Monday, June 11 and is scheduled to arrive in Cleveland on August 6 or 7.Â He will ride 60 to 70 miles per day and take about 17 days of rest throughout the trip.Â On some of those days, he will be speaking to different groups about rare diseases, obviously to include periodic paralysis.Â Thanks to our gracious and committed friends at Strongbridge Biopharma, Gabe will not have to be concerned about having a place to stay on any of the overnights, since they are sponsoring him.Â They are also supplying him screen printed cycling shirts which also sport the PPA logo.Â Additionally, he will have a van accompanying him to provide any bike parts that need repairing or replacing along the way.
The following link will take you to his planned route, and we will keep you posted on his progress.
This story gets even better because Gabe will be a featured interactive speaker at the PPA Conference held at the Dublin Airport Hilton on August 17 through 19 of this year!Â There is still time for you to register for it at www.periodicparalysis.org.Â We hope to see you there!
Gabeâs positive energy is not simply physical (although that, in itself, is amazing), but from spiritual and emotional perspectives as well.Â Raising awareness for periodic paralysis and offering guidance are at the core of the PPA mission statement, and whatever anyone can do to fuel those pursuits puts the community that much closer to cures.Â Â Use the Periodic Paralysis Association website to follow Gabeâs progress!
All the best from your friends on the PPA Board,
Dr. Jacob Levitt