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7.27.18 It’s Show Time

July 27, 2018 / sunnystrongblog

Richter runs for SunnyStrong starts at 8AM MDT (7AM Texas Time) and continues through 12PM on 7/29

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100 miles of insanity!

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7.28.18 And Jake Was Running →

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9.13.19 Sunny Loves Tom September 13, 2019

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#Repost @larrychallengeals with @get_repost ・・・ Patricia - part 3 What gives you hope? When I was diagnosed with ALS in March 2014, my knowledge was limited to internet articles. Hearing this diagnosis was devastating! Thankfully, I was quickly connected with the ALS Association and The Houston Methodist Multidisciplinary Clinic. The amazing employees helped to encourage and educate us. Most importantly, my spirit of hope was revived. The unwavering commitment of Dr. Stanley Appel, his team and financial support from the ALS Association has been instrumental in developing a therapy that has shown promise to halt progression. Although this therapy is currently in clinical trial, it is my hope and belief that we will obtain FDA approval for Treg as a prescribed treatment. I am also hopeful that we will have access to other treatments within one year.

#Repost @larrychallengeals with @get_repost ・・・ Patricia - part 2 What else do you want people to know about living with ALS? Living with ALS is not easy but thanks to technological advances, we are able to have some degree of independence. If unable to speak or use hands, we can use the eye gaze to advocate, contact family and friends, use Alexa and in some cases, continue employment. Boggie boards are excellent for patients who can use their hands but can no longer speak. An example I found to very impressive.....there is a 48 year old Texas woman who was diagnosed in 1994 at the age of 23. She cannot speak, has a trache, vent, feeding tube and works from home for a law firm. Taking advantage of technology, spending time with family and friends, and traveling is the best medicine for occupying your mind with something other than ALS.

#Repost @larrychallengeals with @get_repost ・・・ We have been home for a week now and have had just enough time to get settled in, before taking off again. This time I will be disconnecting for a couple weeks. But I would like to share another story with you before I go. Meet my friend, and huge Astros fan, Patricia. Part 1 What is the best thing that has happened since diagnosis? Dr. Stanley Appel, my 86 year old renowned neurologist, has publicly stated on numerous occasions that ALS is a "nice person's disease". Since my diagnosis, I realized that he is correct in his description. My circle of friends and acquaintances have increased with these nice people who make me smile every time we meet and is one of the best things that has happened since my diagnosis.

my girl @thelizzinator continuing to get praise for her AMAZING accomplishment #welovemrb #liveworkplayfw #fwtx

“We can’t manage this disease on our own, so we’re dependent on others.” https://alsnewstoday.com/2019/09/05/desperate-places-choice/

i just love this guy “I neglected to factor in the overpowering determination of ALS in its pursuit of havoc.” https://alsnewstoday.com/2019/09/11/chairway-heaven-power-wheelchair-medicare-mobility-process/

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