March 2015

Day 21- For Sweet Iris- GM1- Gangliosidosis

Day 21- March 20th, 2015Learn more and help Iris athttp://www.sweetiris.org GM1- Gangliosidosis – a rare degenerative and neurological disease affecting children30+ miles, Fredericksburg-Unionville, VA area for sweet Iris […]

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Day 20- Running for Eme in Virginia #Fight4Sight

Today, through Prince William County enroute to Fredericksburg and past Quantico U.S. Marine Corps Training Base, I run strong for Eme from Eme’s Army. I met the […]

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Day 18- NORD and Run4Rare

Day 19- Run for Rare feature length documentary Director Ezio Lucido and National Organization of Rare Diseases (NORD) President and CEO Peter Saltonstall sat down for an excellent […]

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Day 18- Press Conference with Congress

Day 18- Good Morning and Happy St. Patrick’s Day. Today’s event….FOR IMMEDIATE RELEASEMarch 16, 2015 Contact:          Matthew Kravitz (202) 731-3017 matthew.kravitz@mail.house.gov  (Garamendi)John Byers (202) […]

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Day 17- Day OFF- 21st Century Cures with Reps. Upton and DeGette

Day 17- OFF-Today, I had the honor of meeting with United States House of Representatives – Energy and Commerce Chairman – Congressman Fred Upton (R-Michigan) and Congresswoman […]

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Day 13- Reached D.C. – aHUS- 

Day 13- Today is dedicated to 1000 people globally, and 300 people in the U.S. affected by the very rare disease- aHUS- Atypical Hemolytic Uremic Syndrome. I […]

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Day 13- Hail to the Chief

http://www.dailyrepublic.com/news/fairfield/allio-to-begin-tenure-as-chief-tibbet-to-retire/Day 13- I am just miles from reaching the Nation’s Capital of Washington D.C. – I find it very fitting location for a special recognition of a special […]

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Day 12- For Scott, USAF Veteran

Day 12- Today March 11, 2015 is dedicated to Scott Pettengill from California who has a RARE disease called SCA2 (much like ALS). Scott is a United States […]

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Day 11- For Nick Heuchan, Police, American Flag

Day 11- Considering his achievement of Eagle Scout rank and our close proximity to Fort McHenry. Battle of Baltimore against the invading British in 1814- Francis Scott Key- […]

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Day 11- NBC Baltimore

Day 11-Thank You to Kim Dacey NBC Baltimore WBAL 11. Story will air tonight at 5pm and 6pm. #Baltimore @kimdaceywbal 

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Day 10- Phone Call from Jacoby Shaddix- Papa Roach 

End of Day 10- Received a phone call from England this evening from Jacoby Shaddix – Lead Singer for world class rock band Papa Roach AND a Producer […]

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Day 10- Dedicated to Seth and Carter Patten- Pitt Hopkins Syndrome

Day 10 is dedicated to two 7 year old identical twins with a very rare disease called Pitt Hopkins. In fact, Seth and Carter Patten from Jacksonville, […]

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Day 9- Prepping for D.C.

Day 9- I can confirm I will be meeting with California Congressman (former CA Lt. Governor) John Garamendi next week in D.C and possibly other members of Congress […]

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Day 9- Hello Maryland 

Day 9- 130 Miles Down, 2,870 to go. 4 States Down, 9 to go (and D.C.). Goodbye Delaware, Hello Maryland! #Maryland #Run4Rare

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Day 9- Face Everything and Rise

Day 9- “Let us go forth with fear and courage and rage to save the world.” – Grace Paley I am fired up. A few quotes to motivate y’all. […]

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Day 8- Updates, Getting into a Rythym 

Day 8- Special Note: First of all, thank you all for the kind words and support. I will soon start dedicating every day to a different RARE cause […]

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Day 8- Special Mention- Celia Betz 

 http://betzfamilycolumbus.blogspot.com/2013/10/when-whole-world-is-winner.html?m=0A 2013 Blog from Betz Family in Columbus 4 years ago today, on the initial 2011 Run for Research, I dedicated the very first day of running to […]

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Day 8- America 

Day 8- “Before you can inspire with emotion, you must be swamped with it yourself. Before you can move their tears, your own must flow. To convince […]

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Day 8- American Flag and What It Means to Me 

Day 8- A outstanding blog written about the American Flag I carry by my friend Janet Bizjak who is inspiring to me for her positive attitude and daily […]

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Day 7- Phone Call from CA State Assemblyman Jim Frazier 

I received a phone call today from State of California Assemblyman- The Honorable Jim Frazier. Mr. Frazier called to wish me luck on my Run for Rare […]

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Day 7- Met “Garrett the Grand”

Day 7- “Garrett the Grand” has entered the building. Had a great meeting with the Coyne family from the Philadelphia area. Glad the weather improved from yesterday […]

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Day 7- PHI 

Day 7- I am encouraged by the reaction once again of the general public as I trek toward Washington D.C. People honking, waving, cheering me on. A […]

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Day 6- Projected Miles

Day 6- Glad I projected a slower start for the Run for Rare to accommodate for Mother Nature. I will most likely cross the 100 mile mark […]

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Day 6- Snow Day OFF

Day 6- Snow Day Off in Philadelphia. Convo with “Garrett the Grand”‘s dad Joe Coyne and pics of the Preston and Steve Show. Thank you Preston and […]

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Day 5- Preston and Steve tomorrow 

Day 5- Tomorrow morning 3/5 at 745 AM, I will be live and in-studio on 93.3 WMMR FM Philadelphia Radio on the Preston and Steve Show  talking […]

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