Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.
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According to a recent article in The British publication The Economic Times, a group of researchers at McMaster University have a win-win proposal for myotonic dystrophy (MD) patients. Eleven people were…
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12 Weeks of Exercise Increased Fitness in Myotonic Dystrophy Patients
Thanks to Amylyx Pharmaceuticals, Canada becomes the first country worldwide to have access to an ALS drug branded Albrioza (originally AMX0035). According to an article in Yahoo News, the drug…
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Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)
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In normal development, genes are usually inherited in pairs - with one copy from the father and one inherited from the mother. When one copy of the TCF4 gene, which…
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A New Study Finds That Gene Therapy May Prevent or Reverse Pitt-Hopkins Syndrome
We have been told occasionally that certain phrases we use when speaking with a terminally ill patient may sound insensitive. We have also been told what we should not say…
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Do We Need a “Rule Book” to Speak With Terminally Ill Patients?
Pancreatic cancer is one of the deadliest forms of cancer. According to the American Cancer Society (ACS), only about 11% of patients are expected to survive more than five years…
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A Novel Treatment for Pancreatic Cancer, a Deadly Disease
Lately, the first thing that enters a person’s mind if they encounter an unusual pain is that they may have cancer. Yet that was the last thing Georgina Masson, an…
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They Diagnosed Tonsillitis, But it Was Actually Acute Myeloid Leukemia
Sydney Miller, born in the UK in March 2020, has an extremely rare disease. Newsweek recently carried a story about Sydney and her illness. This little girl captured the hearts…
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Primrose Syndrome Affects Only Fifty Children Worldwide
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Leukemia, in general terms, is a form of cancer that affects the bone marrow and blood cells. According an article in Medical News Today, leukemia is categorized in accordance…
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An Overview of Chronic Lymphocytic Leukemia (CLL)
The Irish Times recently featured a book by Dr. Karl Herrup about “How Not to Study a Disease." Dr. Herrup is clear that he opposes the theory that the amyloid…
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What Causes of Alzheimer’s? Time for a New Direction
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Medscape recently published an article stating that the EMA is conducting a review of rucaparib, a drug used to treat patients with a range of ovarian cancers that have relapsed. These…
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The EMA is Reviewing the Ovarian Cancer Drug Rucaparib After New Reports
Data based on approximately five million people suggests that esophageal cancer has nearly doubled from 2012 through 2019. According to a recent report in MSN, the incidence of precancerous Barrett’s…
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The ACS Estimates That Esophageal Cancer Almost Doubled From 2012-2019
On January 9th, Jacob Wiley was preparing to see his three-year-old daughter Adelaide in the hospital. It was a day that Jacob and his wife Ashley will never forget.…
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Tango 2 and Kawasaki Disease: Their Two Daughters Have Potentially Fatal Diseases
EDIT-301 is an investigational, gene editing medicine developed by Editas Medicine for the treatment of beta thalassemia. As recently reported in the Business Insider, EDIT-301 has just been granted the…
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FDA Grants Rare Pediatric Disease Designation for Experimental Beta Thalassemia Drug
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Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
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Compassion Corner: Patient Survives Stage 4 Ovarian Cancer and Credits Her Compassionate Oncologist
Dr. Anthony Fauci, NIAID Director, and his colleagues have suggested the possible use of a promising new vaccine for people at high risk of contracting a rare, deadly mosquito-borne virus.…
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New Vaccine for Equine Encephalitis Virus in the Works
Mandy Maysey is a 49-year-old mum living in Australia with her three children, who are all coping with an unpredictable disorder. Tourette syndrome (TS) is a neurological disorder involving repetitive…
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Loving and Living With Three Children Who Have Tourette Syndrome
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
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The CDC Issues a Nationwide Health Alert to Report Pediatric Hepatitis Cases
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
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Spread Awareness for Tourette Syndrome Awareness Month
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Many in the medical profession believed that the road to rapid recovery in myalgic encephalomyelitis was through exercise. Eighty-two-year-old Veronica Jones of Gloucestershire, UK believes that the advice given…
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A Teacher in the UK With Myalgic Encephalomyelitis was Advised to Exercise for Rapid Recovery
The new FDA-approved oral formulation of Radicava ORS (edaravone) is more convenient than the intravenous formulation, yet the efficacy and composition remain the same. The oral formulation may also be…
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Amyotrophic Lateral Sclerosis Patients Have an Alternative to Radicava ORS via IV
Sophie had a wish, and this month her mother is going to parliament to fulfill that wish. Sophie’s death has brought about the first House of Commons debate on childhood…
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Sophie Died Due to Poor Care, Now British Parliament is Holding a Debate on Childhood Cancer
The WHO’s Emergency Response System Has Been Activated. Just last month, a World Health Organization (WHO) representative assured VICE World News that the WHO is taking this global outbreak very…
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Hundreds of Children Around the World Have Been Hospitalized With a Mysterious Liver Disease
When a patient or caregiver speaks of immunotherapy it is often with a more confident tone than when they are speaking about chemotherapy. However, the odds of a patient going…
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Immunotherapy: A Failed Clinical Trial Led to a Valid Treatment Strategy
ITP, or immune thrombocytopenia, is a platelet disorder where the immune system destroys its own platelets by way of destructive antibodies. Platelets are very small blood cells that originate in…
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Thrombocytopenia: Clinical Trial Results Look Promising for Experimental Treatment
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Imagine the feeling of working for years with the goal of saving children who have congenital athymia. Then thirty years later the FDA approves a regenerative medicine based on your…
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Dr. Markert Devoted Thirty Years to Developing a Viable Athymia Treatment