Recent COVID-19 News

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Featured Article

NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Sarcoidosis News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Ehlers-Danlos News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Lambert-Eaton News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Neurotrophic Keratitis News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
Batten Disease News, COVID-19 News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Genetic Obesity News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Phenylketonuria News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, FAP News Today
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
Better Ways of Capturing Progression in Types 2 and 3 Identified in Study
COVID-19 News, SMA News Today
January 22, 2021
Four measures of motor ability — including one of continuous upper limb activity that can be done at the home — reliably detect significant functional changes over one or two years in people with spinal muscular atrophy (SMA) types 2 and 3, according to a natural history study. These findings support the use of such […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, HLH News
January 21, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]

What I Want My Loved Ones to Understand About Sarcoidosis
COVID-19 Columns, Sarcoidosis News Columns
January 22, 2021
Dear family, friends, and caregivers, First, I want to thank you for being people I can count on to help me through my health issues, and I apologize for putting you in this situation. Dealing with a chronic condition has taken a lot out of me, and I’m sure it’s been quite a challenge for […] [read/download]
Car Repairs Aren’t Easy When You Have MS
COVID-19 Columns, Multiple Sclerosis News Today Columns
January 22, 2021
I love the car I drive, but I’ve hated going to the dealer to get my car serviced. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I do walk, I need to […] [read/download]
My COVID-19 Vaccine Experience, Part 1: Expectations and Frustrations
COVID-19 Columns, IBD News Today Columns
January 21, 2021
First in a series. On Dec. 11, after I had spent more than 80% of 2020 at home, the door to normalcy cracked open. That day, the U.S. Food and Drug Administration authorized the Pfizer-BioNTech COVID-19 vaccine for emergency use. Being an immunocompromised transplant patient with Crohn’s, I fall into Phase 1C, as defined by […] [read/download]
Help Support Your Healthcare Team During the Pandemic
COVID-19 Columns, Parkinson’s News Today Columns
January 21, 2021
While many holiday traditions were on hold at the end of last year, one tradition remained in our house: the annual Santa Letter. It started over 20 years ago, when our boys were young. Every year, they would find a letter carefully hidden in the Christmas tree, and then embark on a treasure hunt, following […] [read/download]
As a Caregiver, Going Down the ‘What If’ Rabbit Hole Isn’t Helpful
ALS News Today Columns, COVID-19 Columns
January 21, 2021
My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round of paperwork in the mail. […] [read/download]
I Can Still Be Productive During a Sickle Cell Crisis
COVID-19 Columns, Sickle Cell Disease News Columns
January 20, 2021
I’m writing this column during a sickle cell disease crisis. I have not had one this bad in a while, so I’ve been feeling pretty low. I recently explained to a friend that I hate feeling like I am helpless and wasting time whenever I have a crisis. I have an ever-growing list of things […] [read/download]
Crawling Toward Fitness as My Abilities Change
COVID-19 Columns, Friedreich’s Ataxia News Columns
January 20, 2021
My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed on my stomach, my physical therapist towered above me and yelled triumphantly, “You just crawled across a whole tile of the mat!” It […] [read/download]
Why I Broke the ‘6 Feet Apart’ Rule
COVID-19 Columns, Cystic Fibrosis News Today Columns
January 19, 2021
Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this rule by now. They’ve either lived it, heard it (backwashed in this very column), or seen it in a dramatic film featuring Cole Sprouse, who’s […] [read/download]
Outsmarting the ALS Identity Thief
ALS News Today Columns, COVID-19 Columns
January 19, 2021
Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed to keep a strong hold […] [read/download]
Losing My Sense of Taste Taught Me a Lesson in Caregiving
COVID-19 Columns, Huntington’s Disease News Columns
January 19, 2021
Last November, I joined a club. I share this news with the same spirit that Groucho Marx once wrote his resignation letter to the Friar’s Club: “I don’t want to belong to any club that would accept me as one of its members.” I’m referring to the COVID-19 club. I knew I had joined it […] [read/download]

NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Sarcoidosis News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Ehlers-Danlos News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Lambert-Eaton News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Neurotrophic Keratitis News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
Batten Disease News, COVID-19 News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Genetic Obesity News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, Phenylketonuria News
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, FAP News Today
January 22, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]
Better Ways of Capturing Progression in Types 2 and 3 Identified in Study
COVID-19 News, SMA News Today
January 22, 2021
Four measures of motor ability — including one of continuous upper limb activity that can be done at the home — reliably detect significant functional changes over one or two years in people with spinal muscular atrophy (SMA) types 2 and 3, according to a natural history study. These findings support the use of such […] [read/download]
NORD’s Caregiver Respite Program Continues Through Pandemic
COVID-19 News, HLH News
January 21, 2021
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, […] [read/download]

What I Want My Loved Ones to Understand About Sarcoidosis
COVID-19 Columns, Sarcoidosis News Columns
January 22, 2021
Dear family, friends, and caregivers, First, I want to thank you for being people I can count on to help me through my health issues, and I apologize for putting you in this situation. Dealing with a chronic condition has taken a lot out of me, and I’m sure it’s been quite a challenge for […] [read/download]
Car Repairs Aren’t Easy When You Have MS
COVID-19 Columns, Multiple Sclerosis News Today Columns
January 22, 2021
I love the car I drive, but I’ve hated going to the dealer to get my car serviced. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I do walk, I need to […] [read/download]
My COVID-19 Vaccine Experience, Part 1: Expectations and Frustrations
COVID-19 Columns, IBD News Today Columns
January 21, 2021
First in a series. On Dec. 11, after I had spent more than 80% of 2020 at home, the door to normalcy cracked open. That day, the U.S. Food and Drug Administration authorized the Pfizer-BioNTech COVID-19 vaccine for emergency use. Being an immunocompromised transplant patient with Crohn’s, I fall into Phase 1C, as defined by […] [read/download]
Help Support Your Healthcare Team During the Pandemic
COVID-19 Columns, Parkinson’s News Today Columns
January 21, 2021
While many holiday traditions were on hold at the end of last year, one tradition remained in our house: the annual Santa Letter. It started over 20 years ago, when our boys were young. Every year, they would find a letter carefully hidden in the Christmas tree, and then embark on a treasure hunt, following […] [read/download]
As a Caregiver, Going Down the ‘What If’ Rabbit Hole Isn’t Helpful
ALS News Today Columns, COVID-19 Columns
January 21, 2021
My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round of paperwork in the mail. […] [read/download]
I Can Still Be Productive During a Sickle Cell Crisis
COVID-19 Columns, Sickle Cell Disease News Columns
January 20, 2021
I’m writing this column during a sickle cell disease crisis. I have not had one this bad in a while, so I’ve been feeling pretty low. I recently explained to a friend that I hate feeling like I am helpless and wasting time whenever I have a crisis. I have an ever-growing list of things […] [read/download]
Crawling Toward Fitness as My Abilities Change
COVID-19 Columns, Friedreich’s Ataxia News Columns
January 20, 2021
My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed on my stomach, my physical therapist towered above me and yelled triumphantly, “You just crawled across a whole tile of the mat!” It […] [read/download]
Why I Broke the ‘6 Feet Apart’ Rule
COVID-19 Columns, Cystic Fibrosis News Today Columns
January 19, 2021
Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this rule by now. They’ve either lived it, heard it (backwashed in this very column), or seen it in a dramatic film featuring Cole Sprouse, who’s […] [read/download]
Outsmarting the ALS Identity Thief
ALS News Today Columns, COVID-19 Columns
January 19, 2021
Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed to keep a strong hold […] [read/download]
Losing My Sense of Taste Taught Me a Lesson in Caregiving
COVID-19 Columns, Huntington’s Disease News Columns
January 19, 2021
Last November, I joined a club. I share this news with the same spirit that Groucho Marx once wrote his resignation letter to the Friar’s Club: “I don’t want to belong to any club that would accept me as one of its members.” I’m referring to the COVID-19 club. I knew I had joined it […] [read/download]

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