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June Is Dedicated to Myasthenia Gravis Awareness

www.myasthenia.org

Myasthenia gravis (MG) (Mai-uhs-thee-nee-uh   gra-vuhs) is a rare, chronic, heterogeneous, and unpredictable autoimmune disease.

MG results from a problem in signaling between nerves and muscles. This problem happens in the neuromuscular junction (NMJ), the place where nerve cells and muscles communicate. Generalized myasthenia gravis (gMG) is caused by antibodies in your immune system that get in the way of signals between nerves and muscles at the NMJ that can weaken muscles throughout the body.

Shanaz, a single mom and interior designer in Los Angeles, was living an active life in 2022 when she began experiencing trouble swallowing and was diagnosed with gastroesophageal disease. That diagnosis didn’t feel quite right to her. In 2023 her symptoms took a turn for the worse: She lost her vision and couldn’t talk or swallow. At that time, she was correctly diagnosed with gMG.

Those living with gMG may experience a variety of symptoms that can make activities of daily living very challenging – activities like talking, chewing, swallowing, breathing, brushing teeth or hair, or even getting up from a chair. Those living with gMG may appear healthy on the outside, but what is happening on the inside can seriously impact every part of life.

Shanaz’s story highlights the challenges of misdiagnoses and delayed diagnosis, and underscores the critical role of self-advocacy in navigating complex medical conditions. Shanaz will tell her story. She’ll be joined by Dr. Said Beydoun (Suh-eed Bay-doon) who will discuss the symptoms and triggers of gMG and a treatment option that addresses the underlying causes of the condition.

Interview courtesy: UCB, Inc. (References available on request)

#gMG

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Courtesy: Mirum Pharmaceuticals, Inc

#pspartners #mirum

The post Rare Disease Day is February 28thIT MAY BE AN “INVISIBLE ILLNESS” Yet One Major Symptom Remains Relentless Hear from Former NCAA All-American Hockey Player Who is Now a Hockey Coach appeared first on Good News!.

• WHAT: Imagine living with chronic pain that feels like hot coals burning in your skin and experiencing boils in some of your most intimate areas? For the estimated 1 in 100 people living with the debilitating skin condition called hidradenitis suppurativa (HS)*, it’s everyday life. “The Beacons: Illuminating HS Stories” will feature the stories of six people living with the condition, and how it impacts everything from their day to day life to relationships and beyond (you can watch the trailer here.) It is co-produced by advocate, journalist, and filmmaker Jasmine IVANNA Espy. The event will include a screening of the 30-minute film, followed by a panel discussion.
o About Hidradenitis suppurativa (HS): Hidradenitis suppurativa, or HS, is a condition that causes small, painful lumps to form under the skin, often where skin rubs together, such as the armpits, groin, buttocks, and breasts. The lumps heal slowly, recur, and can lead to tunnels under the skin and scarring. Once considered a rare condition, it is now thought that as many as 1 in 100 people are affected by HS.
o Those living with the condition struggle with more than their ability to feel confident, and it affects things like the ability to put clothes on, sit down, participate in their favorite hobbies, and pursue partnership and intimacy.

#jasmineivanna #producer #beacons #hidradenitissuppurativa #hs #filmmaker #illuminatinghsstories #skindisease #disfigure #painful #chronicpain

some more info, go to http://pausetheworldforpeace.org/2023/06/26/anthony-tony-yadao-vp-of-medical-affairs-for-immunology-novartis/

The post Documentary premiere at Tribeca Film Festival about 29-year old influencer, filmmaker and advocate Jasmine IVANNA Espy. She’s also the producer of “The Beacons: Illuminating HS Stories,” a new docuseries from Novartis that highlights her story and the stories of five other people living with hidradenitis suppurativa (HS) appeared first on Good News!.

Hemophilia A is a rare, lifelong condition in which a person’s blood does not clot properly due to a missing or defective factor VIII clotting protein. While hemophilia mainly impacts men, it can also affect females.

People living with hemophilia A can experience bleeding episodes during everyday activities, which can cause chronic pain and irreversible joint damage, and may impact their quality of life.

The severity of hemophilia is determined by “factor activity levels,” or the amount of clotting factor in the blood. People with lower factor activity levels have a greater risk of bleeds, while those with higher factor activity levels have better protection.

Recently, the FDA approved ALTUVIIIO [antihemophilic factor (recombinant), Fc-VWF-XTEN fusion protein-ehtl], a new class of factor VIII replacement therapy for people with hemophilia A that delivers normal to near-normal factor activity levels (over 40%) for most of the week. As the first and only high-sustained factor VIII replacement therapy, it provides significant bleed protection with one weekly dose. The approval of this innovative treatment can empower patients and physicians to elevate treatment expectations.

Dr. Johnathan Roberts, Associate Medical Director from The Bleeding & Clotting Disorders Institute in Illinois and hemophilia A patient, to discuss the importance of maintaining factor activity levels and this new treatment for hemophilia A.

Interview is courtesy of Sanofi.

INDICATION
ALTUVIIIO [antihemophilic factor (recombinant), Fc-VWF-XTEN fusion protein-ehtl] is an injectable medicine that is used to control and reduce the number of bleeding episodes in people with hemophilia A (congenital Factor VIII deficiency).

Your healthcare provider may give you ALTUVIIIO when you have surgery.

IMPORTANT SAFETY INFORMATION

What is the most important information I need to know about ALTUVIIIO?
Do not attempt to give yourself an injection unless you have been taught how by your healthcare provider or hemophilia center. You must carefully follow your healthcare provider’s instructions regarding the dose and schedule for injecting ALTUVIIIO so that your treatment will work best for you.

Who should not use ALTUVIIIO?
You should not use ALTUVIIIO if you have had an allergic reaction to it in the past.

What should I tell my healthcare provider before using ALTUVIIIO?
Tell your healthcare provider if you have had any medical problems, take any medications, including prescription and non-prescription medicines, supplements, or herbal medicines, are breastfeeding, or are pregnant or planning to become pregnant.

What are the possible side effects of ALTUVIIIO?
You can have an allergic reaction to ALTUVIIIO. Call your healthcare provider or emergency department right away if you have any of the following symptoms: difficulty breathing, chest tightness, swelling of the face, rash, or hives.

Your body can also make antibodies called “inhibitors” against ALTUVIIIO. This can stop ALTUVIIIO from working properly. Your healthcare provider may give you blood tests to check for inhibitors.

The common side effects of ALTUVIIIO are headache, joint pain, and back pain.

These are not the only possible side effects of ALTUVIIIO. Tell your healthcare provider about any side effect that bothers you or does not go away.

Please see full Prescribing Information.

Interview is courtesy of Sanofi

The post ADVANCING CARE FOR PEOPLE WITH HEMOPHILIA April 17, 2023 is World Hemophilia Day appeared first on Good News!.

A New Documentary

THE EMOTIONAL JOURNEY OF HOW A FAMILY

TURNED THE CHALLENGES OF THEIR TEENAGE SON’S RARE DISEASE INTO A MISSION FOR RAISING AWARENESS

Clinton Moore – a devoted father and tireless advocate for his son, who lives with a rare disease called cystinosis – is on a mission to help bring awareness to the condition that has affected his son’s life and impacted his family to its core.

In a new documentary that recently premiered, Moore describes when his son was first diagnosed with cystinosis, and how difficult it was to accept the doctor’s conclusion. A rare disease diagnosis wasn’t the answer he wanted, but he soon came to understand it.

Cystinosis is a rare genetic disease that results in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. Symptoms usually appear early in a child’s first year of life, and it’s a lifelong disease. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, and hypothyroidism, among other issues. Without treatment, children with cystinosis will usually develop end stage kidney failure or die prematurely.

Moore says since cystinosis never stops, so neither does he. In the film, he explains that giving up hope means you’ve completely given up, so he won’t allow that to happen. In a heartwarming moment in the film, Moore explains how amazed he is that his son has chosen to be as happy as he is each day, considering all his challenges. Part of his son’s daily routine includes a regimen of dozens of pills and eye drops every waking hour.

Moore has been doing all he can to bring attention to the disease. In the documentary, Moore can be seen completing a 57-mile walk within 24 hours, dedicated to bringing awareness and support to the cystinosis community.

He believes more awareness about the disease is crucial in helping to raise money for research and he won’t stop doing all he can until a cure is found. Moore’s passion has moved him from being a parent on the sideline not thinking he could make a difference, to the president of the Cystinosis research Network (CRN) the longest standing active non-profit supporting cystinosis families worldwide.

One in 10 Americans are affected by a rare disease, so it’s important to bring attention to the issues surrounding them. Also noteworthy is the fact that many treatments developed for rare diseases have been repurposed, which is the identification and application of already approved drugs to treat new diseases.

Clinton Moore, patient advocate and CRN president, will be available to talk about the documentary, the organization CRN, the disease and how to support those afflicted with the cystinosis.

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They made us believe that luxury was the rare, the expensive, the exclusive, and everything that seemed unattainable …

Now we realize that luxury were those little things that we did not know how to value when we had them and now that they are gone, we miss them so much …

Luxury is being healthy. Luxury is not stepping in a hospital.
Luxury is being able to walk along the seashore.

Luxury is going out on the streets and breathing without a mask.

Luxury is meeting with your whole family or with your friends.

Smiles are luxury. Luxury is the hugs and kisses.

Luxury is enjoying every sunrise.
Luxury is the privilege of loving and being alive.

All this is a luxury and we did not know …

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Jacques Lowe was a 26 year old freelance journalist in 1956 when he met Robert Kennedy. Because of Lowe’s photojournalistic talent, he was assigned by three magazines within the same week to photograph Chief Counsel Kennedy. Robert Kennedy wondered if Lowe was the only photographer representing all printed magazines. Jacques Lowe and Robert Kennedy became friends and Lowe was invited to spend weekends at Kennedy’s Hickory Hill home in Virginia. Joseph Kennedy, Sr. was impressed with Lowe’s photographs and requested he photograph his other son ‘John’. Although the initial meeting between Lowe and Senator Jack Kennedy was not an auspicious start, they later connected due to Lowe’s honorable approach to his photographs. Lowe was provided unprecedented access to the private and professional life of one of the most iconic leaders of the 20th century, as well as members of his family.

Over several years he took 40,000 photographs of the couple and their children. The legendary images depict a period covering the intense Presidential campaign trail along with intimate family moments and early years in the White House. Jacques Lowe’s photographs were a powerful visual force that shaped the public’s perception of the Kennedy family and have remained the essential documentary of the charismatic personality of Jack Kennedy and the historical period. The exhibition recounts both the story of these mythical years and the president who, in Lowe’s own words, “empowered each one of us to believe we could make a difference”. Also on exhibit is video of Jacques Lowe speaking about his Kennedy photographs.

Lowe died in May 2001, and his original negatives, which were stored in a World Trade Center bank vault, were lost during the September 11 terrorist attacks. Only 10 negatives, which were out on loan at the time, have survived. The prints in this exhibition are from the Estate of Jacques Lowe’s collection of vintage and modern fine art prints, printed and signed by Lowe prior to his death. Accompanying the exhibition is the book, The Kennedy Years: A Memoir by Jacques Lowe, published by Rizzoli.

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