#TuffysFight 32K Ruck Fundraiser
Donation protected
Greetings everyone,
My name is Justin Michaud and I reside in South Philadelphia, PA. I am starting this campaign for a good friend of mine, Ricardo and his daughter Tatiana.
Tatiana(Tuffy) is 9 years old and has been suffering through LGS.
Lennox-Gastaut Syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike-wave complexes. This triad of mixed seizures, abnormal EEG and intellectual impairment represents one of the most difficult forms of epilepsy to treat. LGS is also a physically dangerous epilepsy syndrome of childhood because of the frequent falls, injuries, and cognitive impairment that can severely limit quality of life.
LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life. This translates to a prevalence of 14,500 - 18,500 children under the age of 18 in the United States and more than 30,000 children and adults in the U.S.
The mortality average for children with LGS is 9 years! Tatiana was on a lot of pharmaceuticals that did supress some of the seizures. They also left her like a zombie. This wasn't any quality of life for Tatiana. Ricardo could not bear to see his daughter suffering like this. Ricardo jumped into action after learning about medical cannabis and the great success it has had with epilepsy patients. NJ luckily, is a medical cannabis state. NJ also has some of the highest price medicine rolling in at about $550-600 (that is $1200 every month) an ounce.!!!! The state also requires a renewel card every 3 months. The state only provides cannabis in the bud form and no other options. Tuffy is 9 so Ricardo has to then go home and turn it into an edible form for her. Ricardo is a fulltime nurse and student, full-time father and full-time activist. In my eyes, Ricardo is the real life Superman. Ricardo has to constantly experiment with different strains of cannabis to see what works best. We the people have now become the in-home scientists. Medical cannabis is federally illegal and is what is stopping the tests and studies that so many people need. Since Tuffy has been using cannabis for 2 years now, her seizures have gone from 300 a day to 0-5. She smiles so much now. She just learned how to ride a scooter and now can be outside without loud sounds causing a seizure.
So now to the fundraiser: 5/21/16- Goal $2000
32k (20miles) weighted (35-40lb) ruck (backpack) or weight vest
Start point: FDR park (8am)
End point: FDR park
Participants for the event- entry $10
Any further donation is appreciated.
We will be covering 20 miles in 6 hrs with one stopping point at the Art Museum.
This will be documented for proof that we did this and memories.
**********UPDATE**********
THIS IS NOW OPEN TO ANYONE WHO WANTS TO WALK WITH US, WITH OR WITHOUT WEIGHT. ANY DISTANCE . ANY MODE OF TRANSPORTATION (BIKE, BOARD,BLADES ETC...)
This campaign starts now and will end 5/31/16. We greatly appreciate any and all support.
Wake the F Up Podcast Episode-#TuffysFight
http://www.podbean.com/media/share/pb-fve87-5a5b45
My name is Justin Michaud and I reside in South Philadelphia, PA. I am starting this campaign for a good friend of mine, Ricardo and his daughter Tatiana.
Tatiana(Tuffy) is 9 years old and has been suffering through LGS.
Lennox-Gastaut Syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike-wave complexes. This triad of mixed seizures, abnormal EEG and intellectual impairment represents one of the most difficult forms of epilepsy to treat. LGS is also a physically dangerous epilepsy syndrome of childhood because of the frequent falls, injuries, and cognitive impairment that can severely limit quality of life.
LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life. This translates to a prevalence of 14,500 - 18,500 children under the age of 18 in the United States and more than 30,000 children and adults in the U.S.
The mortality average for children with LGS is 9 years! Tatiana was on a lot of pharmaceuticals that did supress some of the seizures. They also left her like a zombie. This wasn't any quality of life for Tatiana. Ricardo could not bear to see his daughter suffering like this. Ricardo jumped into action after learning about medical cannabis and the great success it has had with epilepsy patients. NJ luckily, is a medical cannabis state. NJ also has some of the highest price medicine rolling in at about $550-600 (that is $1200 every month) an ounce.!!!! The state also requires a renewel card every 3 months. The state only provides cannabis in the bud form and no other options. Tuffy is 9 so Ricardo has to then go home and turn it into an edible form for her. Ricardo is a fulltime nurse and student, full-time father and full-time activist. In my eyes, Ricardo is the real life Superman. Ricardo has to constantly experiment with different strains of cannabis to see what works best. We the people have now become the in-home scientists. Medical cannabis is federally illegal and is what is stopping the tests and studies that so many people need. Since Tuffy has been using cannabis for 2 years now, her seizures have gone from 300 a day to 0-5. She smiles so much now. She just learned how to ride a scooter and now can be outside without loud sounds causing a seizure.
So now to the fundraiser: 5/21/16- Goal $2000
32k (20miles) weighted (35-40lb) ruck (backpack) or weight vest
Start point: FDR park (8am)
End point: FDR park
Participants for the event- entry $10
Any further donation is appreciated.
We will be covering 20 miles in 6 hrs with one stopping point at the Art Museum.
This will be documented for proof that we did this and memories.
**********UPDATE**********
THIS IS NOW OPEN TO ANYONE WHO WANTS TO WALK WITH US, WITH OR WITHOUT WEIGHT. ANY DISTANCE . ANY MODE OF TRANSPORTATION (BIKE, BOARD,BLADES ETC...)
This campaign starts now and will end 5/31/16. We greatly appreciate any and all support.
Wake the F Up Podcast Episode-#TuffysFight
http://www.podbean.com/media/share/pb-fve87-5a5b45
Organizer and beneficiary
Justin Michaud
Organizer
Philadelphia, PA
Ricardo Rivera
Beneficiary