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.
CNN reported details of Ed’s illness as related by his fiancée Katy Berteau, who remained at this side continually despite risking her own health. Katy and Ed had planned to…
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ESPN Reporter Edward Aschoff Died On Christmas Eve, His 34th Birthday, of a Rare Disease
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According to a recently published article in Targeted Oncology, the results of the Phase III CANDOR trial were presented at the 61st ASH annual conference in Orlando, Florida. The…
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This Three Drug Combination for Multiple Myeloma Looks Promising
A recent article published in Globe Newswire heralded Marinus Pharmaceuticals’ new drug, ganaxolone. The drug has been studied in over 1600 patients and is now being tested in two clinical…
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Rare Epilepsy Updates: One New Drug, Two Clinical Trials, and Orphan Drug Designation
At times there seems to be no happy medium in life. A recent article in Bloomberg claims that the speed at which the FDA is approving newly developed drugs is…
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Is the FDA Approving Drugs too Quickly?
Since most people cannot truly understand the challenges faced by a blind person, then an artist who cannot see is unimaginable. According to a recent article in the British…
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A Blind Artist, A Motivational Speaker Who Can’t Talk, and a Single Mom with Rheumatoid Arthritis
When the Leukemia & Lymphoma Society (LLS) was founded in 1949 by a family in memory of their sixteen-year-old son, cancer was considered a hopeless condition. As noted recently…
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Pediatric Cancer and the 70th Anniversary of the Leukemia & Lymphoma Society
According to a recent article in the ASH Clinical News patients are being encouraged to participate in shared decision-making (SDM) with their doctors, nurses and other medical personnel. The…
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A New Patient-Centered World is Emerging in Hematology
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Encouraging results from a clinical study were reported recently in Science & Enterprise describing a treatment for ALS using stem cells extracted from a patient’s bone marrow. The clinical…
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A New Experimental Treatment Brings Improvement to ALS Patients
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A recent article in Bloomberg’s SFGate focused on the price of drugs. The average patient cannot afford the price of many drugs now on the market. Insurance companies have…
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Four Doctors Who Worked on the Development of Tafamidis Criticize its Price
On Dec 3, 2019 Share A blind artist, a motivational speaker who can’t speak and a young mom with arthritis: These are just three of the British Columbians shattering stereotypes…
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Meet 3 British Columbians shattering stereotypes about their disabilities – My City News
A recent article in the Taunton Gazette describes the dilemma faced by the parents of four-year-old Jaxtien Miller who is a metachromatic leukodystrophy patient waiting for a stem cell…
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After Five Insurance Coverage Denials, the Next Appeal Brought a Young Patient Closer to Receiving Treatment for Metachromatic Leukodystrophy
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A recent article in BioPortfolio carried AstraZeneca’s announcement of the FDA’s approval of CALQUENCE® (acalabrutinib) for adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). The approval…
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IYCMI: CALQUENCE Has Received US FDA Approval to Benefit Adults with CLL
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CRISPR/Cas9 technology reached another milestone with encouraging results in two recent trials of CTX001. An article in Pharmaceutical Technology carried an announcement by CRISPR Therapeutics and Vertex Pharmaceuticals about…
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CRISPR/Cas9 Looks Promising for Transfusion Dependent Sickle Cell Disease and Beta Thalassemia Patients
Status Update: Shared Decision-Making in Hematology Sunday, December 1, 2019 Beth Faiman, CNP, PhD Certified nurse practitioner at the Cleveland Clinic in Cleveland, Ohio In this edition, ASH Clinical News…
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Status Update: Shared Decision-Making in Hematology
The University of Southern California (USC) recently published an article in USC News announcing that researchers have discovered a technique allowing them to untangle the coiled, spiraling DNA molecules.…
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Researchers are Gaining a Better Understanding of Disease Development at the Cellular Level
Amber’s determination to find a miracle for her son Maxwell is detailed in a recent BuzzFeed article. Maxwell and his twin sister, Riley, were born in March 2017. For…
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Her Baby’s SLC6A1 Genetic Disorder is Currently Untreatable, But Amber Freed is Committed to Finding a Cure
Dr. Marc Bonaca, a cardiologist with the Brigham and Women's Hospital in Boston, recently gave a presentation at the Las Vegas 2019 VIVA conference on trends in vascular disease. As reported in…
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Dr. Marc Bonaca Presents Insight Into Future Trends for Cardiovascular Disease and the Need For Teamwork
Wearing a revolutionary-era tricorn hat, doctor Mathew Maurer stood at a lectern in front of an audience of fellow cardiologists in Philadelphia, decrying the price of a new medication that…
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Doctors who helped develop heart drug now balk at $225,000-a-year price
An article in the Hartlepool Mail announced that Lyla O’Donovan, her parents, and her four brothers and sisters will be celebrating Lyla’s seventh birthday on November 28th, 2019 at…
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A Father is Asking for Worldwide Birthday Cards for His Seven-Year-Old Daughter Lyla Who Is Scheduled for her 10th Brain Operation
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An article appeared recently in BioNews announcing the first-ever approval of an RNA-based therapy for use on the British National Health Service. The name of the drug is Patisiran…
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ICYMI: hATTR Amyloidosis was Untreatable Until a Gene Silencing Drug was Approved in the UK
The Golden Age of Health and Wellness is Almost Here A recent article in the Vancouver Weekly News describes the euphoria that accompanied the official declaration of the completion…
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ICYMI: The Golden Age of Health and Wellness is Almost Here
The family of a little girl who is battling health problems after suffering a brain tumour are appealing for people to make her birthday extra special by sending her cards…
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Hartlepool dad’s worldwide birthday card appeal for daughter Lyla O’Donovan, who is facing tenth brain operation
Teamwork prescribed to tackle major demographic trends in vascular disease 13th November 2019 207 Marc Bonaca addresses delegates at VIVA 2019 “Caring for vascular patients is going to take a…
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“Do not be an island”: Teamwork prescribed to tackle major demographic trends in vascular disease
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“Myasthenia” means “muscular weakness”. According to a recent article in The Star, studies in Asia indicate that there are approximately five new cases of myasthenia gravis (MG) reported each…
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Everything You Want to Know About Myasthenia Gravis
Marten Devlieger’s sister Karen, a cystic fibrosis patient, died of the disease at the age of thirty-three. According to a recent article in CTV News Canada, Marten was also diagnosed…
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A Call for Help From A Cystic Fibrosis Patient Directed at the Canadian Government