Over 60 million Americans, about one-fifth of the U.S. population, live in areas where access to healthcare, including IV administration, is often limited. This particularly poses challenges for people with chronic diseases like MS.
Roger was diagnosed with MS when he was 36, and experienced symptoms including migraines, vision loss and leg pain.
However, he has been able to manage his MS thanks in part to a newly approved treatment by the U.S. Food and Drug Administration (FDA).
The treatment is the first and only twice-a-year, 10-minute subcutaneous injection for certain types of MS and provides a new and much needed option for people living with the disease, particularly those who need flexibility in the route of administration or treatment time.
Dr. Robert Shin, Director of the Multiple Sclerosis and Clinical Neuroimmunology Division at UVA Health, is available to discuss the importance of this treatment for MS and will explain how it provides additional choice and flexibility for both healthcare providers and people living with the disease. Roger will also be joining Dr. Shin to talk about his experience with MS and how this treatment option has helped him manage his disease.

Interview is courtesy of Genentech

#ms #managingms #multiplesclerosis #msawarenessmonth #msawareness

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Listen to “SHARING REAL STORIES OF PEOPLE LIVING WITH ALS THIS ALS AWARENESS MONTH in MAY” on Spreaker.


Former Nurse Practioner Diagnosed with Amyotrophic Lateral Sclerosis (ALS) in Her 30’s
Advocates to Raise Awareness

On the day Stephen Hawking succumbed to amyotrophic lateral sclerosis (ALS), 32 year-old Kate Nycz, a former nurse practioner, began her ALS journey. Hearing stories mostly about older men being diagnosed, she never imagined ALS could affect a young woman like herself.

ALS – also known as Lou Gehrig’s disease – is a rapidly progressive, neurodegenerative disease that currently has no cure. People living with ALS eventually lose their ability to speak, swallow, eat, move and breathe.

May is ALS Awareness Month, and in honor of that, we’d like to recognize the experiences of those impacted by this devastating disease and emphasize the importance of spreading awareness among the ALS community and beyond.

On Friday, May 5, Kate will be available to share her ALS story, discuss how she’s advocating and serving as a mentor for people with ALS, especially young women, and how others living with this disease can provide their support. Kate will be joined by her husband and primary caregiver, Kevin.

ALS Facts:
• On average, a new case of ALS is diagnosed every 90 minutes in the U.S.
• An estimated 5,000-6,000 Americans are diagnosed with ALS each year.
• Initial symptoms like muscle weakness, loss of balance and slurred speech can be subtle, and because of this, it can take up to 12 to 14 months to be diagnosed with ALS.
• The majority of people with ALS succumb to the disease two to five years after diagnosis, but disease progression can vary significantly across the patient population.

Interview is courtesy: Mitsubishi Tanabe Pharma America, Inc. (MTPA)
Footnotes available

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Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. Both women and the members of the Everything ALS team have vowed to create a legacy of treatment and cure for their loved ones lost to ALS by building a non-profit determined to tackle the mission of Care to Cure for those diagnosed with ALS.

ALS also known as Lou Gehrig’s disease is a progressive, fatal neuro degenerative disease. It discriminates against no – one It can affect young, old, any race, age, background. It has no treatment and no cure. Those stricken with the disease lose their ability to move, talk, eat while their muscles whither away, causing paralysis and being trapped in their own bodies. Indu Navar and Deb Fabricatore are two of the co-founders of EverythingALS. There are many other dedicated team members including Austen Eadie-Friedman. Everything ALS is Navar’s brainchild a non-profit bringing technological innovations and data science to support efforts–from care to cure– for people with ALS, by offering an open data platform for direct engagement with patients, caregivers, researchers drug companies and using citizen driven research. Their non-profit has grown rapidly in their two short years of existence.

As patient advocates EverythingALS hosts bi-monthly community talks that are designed to provide patients and caregivers with the support and information that they will need throughout their ALS journey. They garner top tier speakers from research, medicine, technology and advocacy to present and answer questions as people watch and participate from their homes. This information and ability to communicate with such high-level experts from the comfort of their homes has been invaluable to the ALS community.

The Everything ALS team believe technology will be the key enabler for the innovation to end ALS. They support efforts to find a cure and or treatment for ALS by creating a platform for direct engagement with patients, researchers and cutting-edge Cloud and AI technologies.
The diverse team is composed of patient advocates, students, nurses, physicians, biologists, ALS patients. They are committed to helping provide information to those who are affected by ALS.

One example of an Everything ALS projects is the Speech Research Study, which is the development of speech analysis of audio and facial metrics for biomarkers for early detection and diagnosis, clinical endpoints and better voice recognition tools for ALS. As of now ALS has no test, or biomarker to assist in diagnosis. Everything ALS shares their data and works in collaboration with various research institutions such as, MIT, Mass General Harvard, UT Austin and Google to name a few. They are also supporting researchers by providing multi-omics analysis with machine learning and big data to uncover ALS causes, subtypes, pathways and drug targets.

EverythingALS continues to recruit participants for this Speech Study of control subjects (those with no ALS diagnosis) and those diagnosed with ALS. They believe citizen driven research will help solve the puzzle that will lead to treatment and cure of ALS. The study takes about 10 minutes per week on your computer, pad, or phone at any time that is convenient for the participant.
They ask people interested to go to www.EverythingALS.org/research or email Deb@EverythingALS, or call Deb directly at 908-420-4751.

#deb #fabricatore #als #indu #navar #treatment #cure #diagnose #lou #gehrigs #disease #neuro #degenerative #ability #everythingals #austen #eadie-friedman #amyotrophic #lateral #sclerosis #eadie #friedman #gehrig #gehrig’s

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Hear from Azure Antoinette, the “Maya Angelou of the Millennial Generation,” …
On Living Well with MS for Black Americans. https://www.moretoms.com/

Azure Antoinette is a commissioned poet, entrepreneur and arts education advocate. She has been living with multiple sclerosis (MS) for over a decade. Azure will be joined by Board-Certified Neurologist and world-renowned MS Specialist Dr. Mitzi Joi Williams, who is an advocate for living well with MS, especially for Black Americans, who may be more at risk for MS than previously thought.

Azure was diagnosed with relapsing-remitting multiple sclerosis (RRMS) at age 28. In her early twenties, she began having spasms, tingling in her hands and feet, and had trouble walking. She felt so tired that it was difficult to stay awake, to watch a movie or drive a car, even after sleeping for 16 hours some nights.

The fatigue experienced by MS patients is much different from an everyday tired feeling, and it can come on with no warning. Managing MS fatigue is an ongoing challenge because it isn’t a one-size-fits-all symptom.

Just ask Dr. Williams, who partners with patients to create personalized treatment plans for their distinctive MS experiences, including:
 Feeling excessively tired or weary
 Having trouble with memory or mental focus
 Experiencing muscle weakness or trouble with coordination

In a public service announcement (PSA) launching in February, Azure encourages Black Americans living with MS to pay attention to their symptoms and advocate for their health. She also shares her first-hand experience as a Black woman living well with MS in a documentary alongside Dr. Williams, who explains what symptoms to watch out for and advice on staying active while managing often overwhelming MS symptoms.

MS is an autoimmune disease where the body attacks itself, making it difficult for the brain to communicate with the rest of the body.2 Approximately one million adults live with MS in the U.S., a majority of whom are diagnosed with RRMS. Women are three times more likely than men to develop RRMS, and Black Americans have an increased risk of developing progressive symptoms.2

Azure and Dr. Williams discuss the upcoming PSA and documentary launch – in time for Black History Month in February and MS Awareness Month in March – and More to MS, an educational resource to help patients and their caregivers learn more about and better manage MS symptoms like fatigue.

Interview courtesy: Janssen

References
1 The National Multiple Sclerosis Society. Fatigue. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue. Accessed January 2021.
2 Multiple Sclerosis Association of America. Who Gets Multiple Sclerosis. https://mymsaa.org/ms-information/overview/who-gets-ms/. Accessed December 2020.

#multiple #sclerosis #mitzi #joi #azure #antoinette #williams #maya #angelou #millennial #generation #ms #living #well #americans #moretoms #poet #entrepreneur #arts #education #fatigue #spasms #tingling #awake #feet #hands #tired #mental #focus #weak #coordination #muscle

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Please let me know if I can facilitate an interview with Tracy Swan, a
Macy’s executive who is living with MS and will be participating with her
team of 60 employees and friends.

Best,
Daphne Mack
Communications Manager
National MS Society,
New York City – Southern New York Chapter
733 Third Avenue
New York, NY 10017
212-453-3250
212-986-7981 (Fax)
http://www.msnyc.org/

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MUSIC ARTIST DAVID OSMOND TO VISIT ATLANTA TO KICK OFF
OUR VOICE IN SONG MULTI-CITY TOUR<\strong>