Oliver Against the Odds
@oliveragainstodds.bsky.social
Rare Disease Warrior. Storyteller. Hope-Builder. 🌟 On a mission to crack open the conversation. Through Oliver’s journey, we’re turning struggles into sparks for change, advocating for healthcare access that doesn’t just exist but empowers.
This disease is rare but his #diagnosisjourney is not. With "good" insurance we thought Oliver was "covered" but during his health crisis the first 6-figure bill came with an impossibly close deadline. #Medicaid stepped in where private insurance failed us. #SaveMedicaid. Save lives, like Oliver’s.
July 22, 2025 at 12:46 AM
This disease is rare but his #diagnosisjourney is not. With "good" insurance we thought Oliver was "covered" but during his health crisis the first 6-figure bill came with an impossibly close deadline. #Medicaid stepped in where private insurance failed us. #SaveMedicaid. Save lives, like Oliver’s.
In #cystinosis patients, mutant cystinosin proteins are degraded via ER-associated pathways, worsening the defect.
Interpretation: in Oliver's body- quality control systems destroy the faulty protein, making cystine buildup worse.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
Interpretation: in Oliver's body- quality control systems destroy the faulty protein, making cystine buildup worse.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
June 30, 2025 at 5:01 PM
In #cystinosis patients, mutant cystinosin proteins are degraded via ER-associated pathways, worsening the defect.
Interpretation: in Oliver's body- quality control systems destroy the faulty protein, making cystine buildup worse.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
Interpretation: in Oliver's body- quality control systems destroy the faulty protein, making cystine buildup worse.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
#Cystinosis is a rare genetic disorder caused by mutations in the #CTNS gene, leading to cystine buildup in lysosomes.
Interpretation: A rare inherited condition where cystine collects in tiny cell parts, damaging organs over time.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
Interpretation: A rare inherited condition where cystine collects in tiny cell parts, damaging organs over time.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
June 4, 2025 at 3:03 PM
#Cystinosis is a rare genetic disorder caused by mutations in the #CTNS gene, leading to cystine buildup in lysosomes.
Interpretation: A rare inherited condition where cystine collects in tiny cell parts, damaging organs over time.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
Interpretation: A rare inherited condition where cystine collects in tiny cell parts, damaging organs over time.
Source: American Journal of Physiology-Renal Physiology, 🔗 in bio.
"I am Oliver's State Representative and #Medicaid matters to me because families of people like Oliver call my office and share stories of how Medicaid is providing life saving medication, medical care, and long term care for themselves or their loved ones."
@snodgrassforwi #MedicaidMatters
@snodgrassforwi #MedicaidMatters
May 20, 2025 at 5:02 PM
"I am Oliver's State Representative and #Medicaid matters to me because families of people like Oliver call my office and share stories of how Medicaid is providing life saving medication, medical care, and long term care for themselves or their loved ones."
@snodgrassforwi #MedicaidMatters
@snodgrassforwi #MedicaidMatters
"I am a small part of Oliver’s childcare team, and since his diagnosis I have learned how imperative the #Medicaid system is for families with kiddos who have rare or complex diagnoses, to help Oliver and others live as normal a life as possible."
@uhhmanduhhlinn #SaveMedicaid
@uhhmanduhhlinn #SaveMedicaid
May 20, 2025 at 3:30 PM
"I am a small part of Oliver’s childcare team, and since his diagnosis I have learned how imperative the #Medicaid system is for families with kiddos who have rare or complex diagnoses, to help Oliver and others live as normal a life as possible."
@uhhmanduhhlinn #SaveMedicaid
@uhhmanduhhlinn #SaveMedicaid
"I am Oliver’s Great Aunt Tammy and #Medicaid is important to me because Oliver cannot live without it, and none of us can imagine living in a world without him. And .... He needs to learn to catch a king salmon in Alaska!!!" 🎣
@tammyajones1162 #SaveMedicaid #MedicaidMatters #IamMedicaid
@tammyajones1162 #SaveMedicaid #MedicaidMatters #IamMedicaid
May 19, 2025 at 9:01 PM
"I am Oliver’s Great Aunt Tammy and #Medicaid is important to me because Oliver cannot live without it, and none of us can imagine living in a world without him. And .... He needs to learn to catch a king salmon in Alaska!!!" 🎣
@tammyajones1162 #SaveMedicaid #MedicaidMatters #IamMedicaid
@tammyajones1162 #SaveMedicaid #MedicaidMatters #IamMedicaid
"I am Oliver’s Aunt and Medicaid means hope! Oliver has lots of challenges but receiving lifesaving medical care should not be one of them. #Medicaid means Oliver matters and we care ♥️."
@ljkruegs #SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@ljkruegs #SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 19, 2025 at 5:02 PM
"I am Oliver’s Aunt and Medicaid means hope! Oliver has lots of challenges but receiving lifesaving medical care should not be one of them. #Medicaid means Oliver matters and we care ♥️."
@ljkruegs #SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@ljkruegs #SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
“I'm Oliver's Extended Family and Chiropractor. Medicaid matters to me because it helps families and individuals, like Oliver and so many, get the medical and financial support they need to live and grow!”
@abbiekgoodman
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks
@abbiekgoodman
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks
May 16, 2025 at 9:27 PM
“I'm Oliver's Extended Family and Chiropractor. Medicaid matters to me because it helps families and individuals, like Oliver and so many, get the medical and financial support they need to live and grow!”
@abbiekgoodman
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks
@abbiekgoodman
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks
“I’m Oliver’s cousin and #Medicaid is important to me because everyone deserves a chance in life, and without it he misses out on that chance."
@jarrett.shields
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@jarrett.shields
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 16, 2025 at 3:30 PM
“I’m Oliver’s cousin and #Medicaid is important to me because everyone deserves a chance in life, and without it he misses out on that chance."
@jarrett.shields
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@jarrett.shields
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
“I am one of Oliver’s best friends. Medicare is important to me because I want to keep growing up together and ride bikes to each other houses! #Medicare is vital in helping Oliver thrive!”
-Grey (@sarahcorkster)
#SaveMedicaid #MedicaidMatters #MedicaidWorks #ProtectOurCare
-Grey (@sarahcorkster)
#SaveMedicaid #MedicaidMatters #MedicaidWorks #ProtectOurCare
May 15, 2025 at 5:50 PM
“I am one of Oliver’s best friends. Medicare is important to me because I want to keep growing up together and ride bikes to each other houses! #Medicare is vital in helping Oliver thrive!”
-Grey (@sarahcorkster)
#SaveMedicaid #MedicaidMatters #MedicaidWorks #ProtectOurCare
-Grey (@sarahcorkster)
#SaveMedicaid #MedicaidMatters #MedicaidWorks #ProtectOurCare
"I know Oliver through his amazing mama, and #Medicaid is important to me because it gives Oliver and others a chance to live a beautiful life!"
@jensenhaese
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@jensenhaese
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 15, 2025 at 5:30 PM
"I know Oliver through his amazing mama, and #Medicaid is important to me because it gives Oliver and others a chance to live a beautiful life!"
@jensenhaese
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@jensenhaese
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
"I am Oliver's fam friend. #Medicaid is important to me bc it protects our most vulnerable people & ensures that they get the care they need despite the American medical system’s deep-rooted injustice and exclusivity. Medicaid grants millions of people the means to merely survive." @brenna2mae
May 15, 2025 at 1:02 PM
"I am Oliver's fam friend. #Medicaid is important to me bc it protects our most vulnerable people & ensures that they get the care they need despite the American medical system’s deep-rooted injustice and exclusivity. Medicaid grants millions of people the means to merely survive." @brenna2mae
“I am Oliver’s PopPop and #Medicaid is important to me because Oliver is a wonderful, caring person with a lot of potential. The world needs people like Oliver. Medicaid coverage gives him what he needs to not only survive but to thrive.”
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid
May 15, 2025 at 2:31 AM
“I am Oliver’s PopPop and #Medicaid is important to me because Oliver is a wonderful, caring person with a lot of potential. The world needs people like Oliver. Medicaid coverage gives him what he needs to not only survive but to thrive.”
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid
"I am Oliver’s Mimi and since Oliver’s diagnosis I have learned that #Medicaid is so much more than normal healthcare - it covers the costs and things we hope most people never need to encounter."
@ltsyring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@ltsyring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 14, 2025 at 11:30 PM
"I am Oliver’s Mimi and since Oliver’s diagnosis I have learned that #Medicaid is so much more than normal healthcare - it covers the costs and things we hope most people never need to encounter."
@ltsyring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@ltsyring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
"I am Oliver’s friend and Medicaid is important to me because it is vital to Oliver’s health and longevity. And I want to be his friend for a very long time!"
@j_landy_atw
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@j_landy_atw
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 14, 2025 at 8:01 PM
"I am Oliver’s friend and Medicaid is important to me because it is vital to Oliver’s health and longevity. And I want to be his friend for a very long time!"
@j_landy_atw
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@j_landy_atw
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
"I am Oliver's mom. Since his diagnosis I have learned how deeply engrained in the healthcare system #Medicaid is, covering the huge gaps private insurance leaves and protecting our kids, pregnant mamas, and those with the rare/ chronic conditions like Oliver!" @caffeine-chaos-tay.bsky.social
May 14, 2025 at 2:58 PM
"I am Oliver's mom. Since his diagnosis I have learned how deeply engrained in the healthcare system #Medicaid is, covering the huge gaps private insurance leaves and protecting our kids, pregnant mamas, and those with the rare/ chronic conditions like Oliver!" @caffeine-chaos-tay.bsky.social
"I'm Oliver's honorary Auntie Claudia. Since his diagnosis I've learned a lot about #Medicaid. Primarily, the mental toll it takes on his family; not knowing from day to day if access to his care will be lost. I didn't give 6+ years of my life to our military for our these kids to be left behind."
May 14, 2025 at 2:55 PM
"I'm Oliver's honorary Auntie Claudia. Since his diagnosis I've learned a lot about #Medicaid. Primarily, the mental toll it takes on his family; not knowing from day to day if access to his care will be lost. I didn't give 6+ years of my life to our military for our these kids to be left behind."
“I’m Oliver’s Aunt Kiki and #Medicaid is important to me because I believe healthcare should be a human right.”
@kristinab_kivi
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@kristinab_kivi
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 14, 2025 at 11:01 AM
“I’m Oliver’s Aunt Kiki and #Medicaid is important to me because I believe healthcare should be a human right.”
@kristinab_kivi
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@kristinab_kivi
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
"I am Oliver’s Auntie B/Uncle B/Uncle Bug and #Medicaid is important to me because it gives Oliver the support he needs to have a chance at life."
@baily_syring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@baily_syring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
May 13, 2025 at 3:14 PM
"I am Oliver’s Auntie B/Uncle B/Uncle Bug and #Medicaid is important to me because it gives Oliver the support he needs to have a chance at life."
@baily_syring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
@baily_syring
#SaveMedicaid #MedicaidMatters #IamMedicaid #WeAreMedicaid #MedicaidWorks #ProtectOurCare
"I am Oliver’s Aunt and #Medicaid is important to me because it provides life saving medicine and support to Oliver to help him live a normal life and thrive!"
@jordynshields12
@jordynshields12
May 13, 2025 at 3:01 PM
"I am Oliver’s Aunt and #Medicaid is important to me because it provides life saving medicine and support to Oliver to help him live a normal life and thrive!"
@jordynshields12
@jordynshields12
Thanks to a strong #CystinosisAware Community, Oliver has treatment and great medical care thats extended his life expectancy.
Follow for more and check out @CystinosisResearchNetwork to learn about the science that is improving the lives of kiddos like Ollie. 💚💚💚💚💚
Follow for more and check out @CystinosisResearchNetwork to learn about the science that is improving the lives of kiddos like Ollie. 💚💚💚💚💚
May 7, 2025 at 5:03 PM
Thanks to a strong #CystinosisAware Community, Oliver has treatment and great medical care thats extended his life expectancy.
Follow for more and check out @CystinosisResearchNetwork to learn about the science that is improving the lives of kiddos like Ollie. 💚💚💚💚💚
Follow for more and check out @CystinosisResearchNetwork to learn about the science that is improving the lives of kiddos like Ollie. 💚💚💚💚💚
Change starts with understanding; both the odds and Oliver. To show what is going on with him, and how he moves through the world: this monthly article series aims to share great sources, while breaking down the big ideas. Lets start with May– #Cystinosis: A Review. https://f.mtr.cool/jnvrybhujv
May 1, 2025 at 1:02 PM
Change starts with understanding; both the odds and Oliver. To show what is going on with him, and how he moves through the world: this monthly article series aims to share great sources, while breaking down the big ideas. Lets start with May– #Cystinosis: A Review. https://f.mtr.cool/jnvrybhujv
Meet Oliver. Warrior. Storyteller. Hope-Builder. On a mission to crack open the conversation. We turn struggles into sparks for change, advocating for healthcare access that doesn’t just exist but empowers. Join us in rewriting the narrative—because #RareIsEverywhere, and every voice matters.
April 29, 2025 at 4:54 PM
Meet Oliver. Warrior. Storyteller. Hope-Builder. On a mission to crack open the conversation. We turn struggles into sparks for change, advocating for healthcare access that doesn’t just exist but empowers. Join us in rewriting the narrative—because #RareIsEverywhere, and every voice matters.