It's finally here - Carlie and I are in Scotland! As you can imagine, I am writing this pre-trip so I'm not even going to try and guess the excitement of arrival, the frigid temperature, or how humbling this opportunity is for us. My plan is to share our experiences in real time via social … Continue reading 12.6.18 29th International Symposium on ALS/MND
Erasmus
Married 11/12/16, My husband Kenneth and I are loving this crazy life of ours with our service dog, Baloo, and grumpy cat, Ian.
12.4.18 Here We Go
People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve
via People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve
12.4.18 ALS as a Woman
So I fully realize that I'm not speaking for the majority of the ALS population, but for those of us that are in the minority - women - this disease poses lots of frustrations. "According to the ALS CARE Database, 60% of the people with ALS in the Database are men..." - ALSA.org This is … Continue reading 12.4.18 ALS as a Woman
12.3.18 Monat Gratitude Week
Good Morning, Y'all! It's officially Scotland Week - whoo hoo! Carlie and I are going to be coming to you loud and proud from the UK so get ready for all kinds of insanity. But before we do that, I want to share the "side gig" Kenneth and I have been working on since April. … Continue reading 12.3.18 Monat Gratitude Week
5 Things That Keep Me Motivated
ALS or otherwise, I think all of us could benefit from this list. via 5 Things That Keep Me Motivated by Dagmar Munn
11.30.18 November is National Family Caregivers Month
This awesome video was put together by the ALS Association from our interviews at Advocacy Conference in honor of National Family Caregivers Month. I'll be the first and loudest to tell you that my primary caregiver, aka my husband, is the cutest and bestest in the history of ever. Caregiving, whether family or paid service, … Continue reading 11.30.18 November is National Family Caregivers Month
Living Loudly and Laughing with Dysarthria
I can hear the ALS in my voice, but I appreciate everyone's lies that "it's not that bad". via Living Loudly and Laughing with Dysarthria by Dagmar Munn
David Hasslehoff, more celebs mourn ‘SpongeBob SquarePants’ creator Stephen Hillenburg
David Hasslehoff, more celebs mourn 'SpongeBob SquarePants' creator Stephen Hillenburg "Sponge Bob" was Nickelodeon's all-time biggest hit. Creator Stephen Hillenburg died Monday at age 57 from ALS, a disease he revealed in 2017. Check out this story on USATODAY.com: https://www.usatoday.com/story/life/tv/2018/11/27/spongebob-squarepants-creator-stephen-hillenburg-dies-57-als/2126368002/https://www.usatoday.com/story/life/tv/2018/11/27/spongebob-squarepants-creator-stephen-hillenburg-dies-57-als/2126368002/
ALS Organizations Collaborate to Advance New Therapeutic into Trials
Contact: Brian Frederick The ALS Association (202) 464-8612 bfrederick@alsa-national.org FOR IMMEDIATE RELEASE ALS Organizations Collaborate to Advance New Therapeutic into Trials First dose of potential treatment AT-1501 given to humans by Anelixis Therapeutics to determine safety and tolerability Boston, MA (November 28, 2018) — Several ALS organizations announced on Wednesday that the first participant was successfully … Continue reading ALS Organizations Collaborate to Advance New Therapeutic into Trials
