May 2015
Day 76- Dedicated to Carl Young, Tim and Paul Samaras
On May 31st, 2013, dedicated storms chasers and meteorologists Carl Young, Tim Samaras, and son Paul Samaras tragically lost their lives in El Reno, Oklahoma in the […]
April 2015
Day 62- The American People and Rare Diseases- Arkansas
Day 62-
This was never about running. It’s about the stories of everyday Americans battling Rare Diseases. A story about America and her great People.
Having an amazing, unscripted […]
Day 57- Little Rock- for Ofc. Jim Capoot #497
Day 56-
Starting very early tomorrow.
Day 57, will be a special day of the 2015 Run for Rare for me, a special family from my hometown of Vacaville, […]
Day 38- For 10 year old Riley in TN
*Filmed yesterday in Knoxville just prior to accident. Easter Sunday and today Day 38 for Riley.Day 38-Today is dedicated to 10 year-old brave young girl named Riley […]
Day 38- In TN, OPEN ACT follow up.
Day 38- Has been a pretty rough last week, getting back on track. Good progress, good spirits. Trekking along through TN toward Nashville slowly but surely. Just got off […]
March 2015
Day 28- Seth Lane- SCID – #WearYellowForSeth
Day 28 – #WearYellowForSeth – http://www.ourlittlehero.wordpress.comDay 28 – #WearYellowForSeth – https://ourlittlehero.wordpress.com Today, I run for Seth Lane in England battling the very rare SCID- about 1 in a million. He was basically […]
Day 27- Run for Rare Undiagnosed Network
Day 27- Today, I run for R.U.N. = Rare Undiagnosed Network and anyone who is battling a Rare unknown or undiagnosed disease or disorder. These patients and families […]
Day 27- 100 Days Left
Day 27- This all started as just an idea. The rarity and lack of awareness for two friends battling Batten Disease bothered me. No script, no blueprint, just a […]
Day 25- Press Release- California Man is Inspiring a Nation
http://www.prlog.org/12438944-california-man-is-inspiring-nation-on-his-epic-3rd-run-across-the-continental-united-states.html Noah Coughlan’s joint Press Conference with Congressional Leaders in D.C.PRLog (Press Release) – March 24, 2015 – LYNCHBURG, Va. — In just twenty-five days, 31-year-old Noah Coughlan has traveled on foot through 5 […]
Day 25- Lynchburg
Day 25- What a day….I’m beat. There it is, Lynchburg #Virginia Beautiful state. Church Street #Run4Rare
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 […]
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 […]
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 […]
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) […]
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 […]
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 […]
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 […]
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 […]
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- […]
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
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 […]
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, […]
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 […]
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