Sandra W. Marlowe
@sandrawmarlowe
Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
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I'm staring at the words of the email with a mixture of emotions. Grateful for technology but lamenting losing my voice. "Your voice is now ready." #endals #useyourvoiceforgood
You're invited to join us today as we celebrate the life of Sandra Marlowe at 5pm EST, watch the livestream at tcpca.org/live #ENDALS
Sandra chose to walk her ALS journey publicly in hopes of helping others. She chronicled it here caringbridge.org/visit/sandrama… #endALS
Sandra's Celebration of Life service will be on Monday, November 20th at 5pm EST at Tates Creek Presbyterian Church in Lexington, Ky. All are welcome to join the celebration of this extraordinary woman. It will also livestream here: tcpca.org/live #endALS
Hi friends. I'm Sandra's daughter, Rachael. Jesus called her home peacefully on November 12th. She finished her race and we know her impact was great. Thanks for joining us on this ALS journey. Our family would love to hear your "Sandra story" - rb.gy/xzw6z0 . #endALS
Today we sold 2 of my bicycles. I cried. From a 5 year old balancing on 2 wheels, biking brought adventure and freedom. I biked to elementary school 4th -6th grades. As an adult, biked hundreds of miles in 15 states and 3 countries. I miss my active life. #EndALS #MND #adventure
My husband and I watched this event. Learning from others who were living with tracheostomies gave me courage to have the surgery 5 monthe later. #ENDALS
Last year, we hosted Ask Me Anything ALS - Tracheostomy, where people living with ALS who have tracheostomies answered all kinds of questions. Watch the recording of Part 1 of the event here, and subscribe to I AM ALS’ channel on YouTube (and find Part 2)! youtube.com/watch?v=HubGF3…
youtube.com
YouTube
Ask Me Anything ALS - Tracheostomy (Part 1)
A wedding is coming! Any tips for navigating a mother-groom dance at the wedding reception when you have advanced ALS? For all the joy of the wedding celebration and the chosen song, I envision feeling somewhat awkward in those minutes. #ENDALS #MND #ALS
It never gets easier. #ALS is brutal. Still 100% fatal. The ache is deep for the losses ALS brings. I so miss eating, speaking, walking, breathing. #EndALS
Some people may interpret the positive posts from ALS patients that it's not that bad to live with. It is one the cruelest diseases known to mankind. Imagine you can't reach your phone 6 inches away, lift a fork or go to the bathroom by yourself. It is a living nightmare.
G I'm grieving the horror of 9/11, and the lives lost Sect of Defense Lloyd Austin's words today resonate, "...amid the horror and grief...and with hearts breaking, Americans looked within themselves and felt called to give back." #EndALS #911Anniversary #NeverForget
Thank you @RepMikeQuigley for supporting funding for Act for ALS. You are a hero to the #ALS community for standing strong in the fight. We must discover treatments for this 100% fatal disease. #ENDALS @PaustDeb @Troy_W_Fields @nicolecimbura @lisamack238 @MommaJillB
I am sitting with my awesome OTs working on bodywork and eye gaze. This is typed with my eyes. #EndALS
In a 100% fatal disease like ALS, we must have regulatory flexibility from the FDA. We do not fit in a 10 year cycle of drug development, as we die too quickly. #ENDALS #KickALS
"Debamestrocel also made a difference in the actual CSF biomarkers. This is big. This means that, unlike the placebo, it is actually changing the push and pull between the body and the disease and we are actually making progress against the disease itself." #NurOwnWorks
Thank you @SenatorDurbin for your compassionate leadership. Please keep ALS research funding at $40m for the @CDMRP. We must support our Veterans who served us. ALS is 100% service related. Our Veterans deserve treatments and cures. #EndALS
I lost speech within 2 yrs of ALS dx. Today I listened to this podcast interview recorded 3 yrs ago, 5 wks after dx. Surreal to hear my voice again. I hope my grands can listen someday and know more about me. #EndALS #MND #KickALS tcpca.org/every-square-i…
The ALS community appreciates your support. Veterans are 2-10x more likely to be dx with ALS. Please @RepGuthrie advocate FDA regulatory flexibility for promising #ALS treatments.on both drug and biologic sides of FDA.
Please review my letter to the @FDACBER and @DrCaliff_FDA in strong support of debamestrocel (“NurOwn”). regulations.gov/comment/FDA-20… @RepGuthrie @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @bsw5020
Education to providers is needed for quicker dx. Let's get PLWALS in trials more quickly.
"The fact that benefit was most notable in those early in their disease course is uniquely compelling rather than discouraging since earlier interventions have higher chances of modifying the disease course in many neurological diseases." #NurownIsSafe #NurownWorks
Please @usaf do the right thing and honor the humanitarian assignment request. #ALS is 100% fatal. You had a history of sensitivity to families in crisis. My family benefitted from #USAF policies in the 1960's that allowed my cousin to be with family in his final months.
My son is in the USAF stationed overseas. He requested a humanitarian assignment to come back home because of my ALS diagnosis. They @usaf denied his request because I’m not “dead” enough. WTH???? I am so incredibly sad…
Shout out to the IAA Veterans team!
So proud of the AMAZING dedication of the enitire @iamalsorg Veterans Team! @shellyhoover @RunningMama0522 & @MommaJillB represented the team so well. Thank you and congratulations to Dr. Huned Patwa.
Thank you @RepGusBilirakis for being an ALS champion! Your vote for passage of #Act4ALS helped get promising drugs in bodies through Expanded Access. And thank you for funding at $75m in the 118th House. We must fund research for this 100% fatal disease.
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