front and back panelsmsabgon.org/images/beat msa trifold 2019.pdf · multiple system atrophy (msa)...

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MULTIPLE SYSTEM ATROPHY (MSA) IS: • A progressive neurodegenerative disease that impacts the autonomic nervouse system and cerebellum. • It is rare - only 4 in 100,000 adults are diagnosed, meaning 15,000 - 25,000 Americans suffer. • Young adult onset, average age of patients is 40-65 years. • Diagnosed in more males than females. MSA CAN BE DIAGNOSED: • Typically 3 – 5 years from onset of symptoms. • With only 75% accuracy, thus a “probable” diagnosis. • With confirmation only after brain autopsy. PATIENTS DIAGNOSED WITH PROBABLE MSA HAVE: • A terminal disease with no known cause or cure. • Symptoms that increase in number and severity with lifespan averaging 7-10 years from onset of symptoms or 3 years from diagnosis. • No disease-altering or life saving treatments at this time. THE COST FOR AN MSA PATIENT: • An average of $44,500/year in primary and secondary costs according to a 2011 study. That is 36% of a typical family's annual income. WE WILL RAISE AWARENESS AND RESEARCH DOLLARS WITH: • Fundraisers and raffles. • Education opportunities, support groups and discussion groups. • Sponsors (like you), ticket sales, silent auction of blues and basketball items. • Entertainment events with live music, childrens’ events. • All proceeds will benefit the MSA Coalition. Each business also has the opportunity to have its logo, along with the Multiple System Atrophy Coalition logo, on a banner for display purposes. Size of logo is dependent on sponsorship level, as follows: • 2”X4” LOGO FOR THE $500 PURPLE GARNET SPONSOR • 3”X5” LOGO FOR THE $1000 TAAFFEITE SPONSOR • 4”X6” LOGO FOR THE $1500 ALEXANDRITE SPONSOR Logos will also be displayed on all publicity materials, on the website, on the live-streaming of the event, and on any DVD produced. Learn about the disease and why it is called "Parkinson's on steroids" and "The Beast." Listen to medical professionals, caregivers and MSA patients as they share information about and experiences with this rare disease during the event. You may well become a rare disease warrior. WHAT THE FUTURE CAN LOOK LIKE WITH YOUR SUPPORT: Neurology 88: June 6, 2017 – Pathologic Confirmation of Retinal Ganglion Cell Loss in Multiple System Atrophy Why is this a look at the future? If researchers identify a method to diagnose MSA early then current and future treatment options can target the disease earlier in its progression. In this case three ladies, one in particular, helped lead to a research program now funded in part by the Michael J Fox Foundation. Their eyes are helping us “see” changes in the ganglion nerve of patients with MSA. Early diagnosis means earlier treatment – and a better opportunity to develop a treatment or cure. THE MULTIPLE SYSTEM ATROPHY • (MSA) COALITION 9935-D REA ROAD, #212 • CHARLOTTE, NC 28277 FRONT AND BACK PANELS

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Page 1: FRONT AND BACK PANELSmsabgon.org/images/BEAT MSA TRIFOLD 2019.pdf · MULTIPLE SYSTEM ATROPHY (MSA) IS: • A progressive neurodegenerative disease that impacts the autonomic nervouse

MULTIPLE SYSTEM ATROPHY (MSA) IS:• A progressive neurodegenerative disease that impacts the autonomic nervouse system and cerebellum.• It is rare - only 4 in 100,000 adults are diagnosed, meaning 15,000 - 25,000 Americans suffer.• Young adult onset, average age of patients is 40-65 years.• Diagnosed in more males than females.

MSA CAN BE DIAGNOSED:• Typically 3 – 5 years from onset of symptoms.• With only 75% accuracy, thus a “probable” diagnosis.• With confirmation only after brain autopsy.

PATIENTS DIAGNOSED WITH PROBABLE MSA HAVE: • A terminal disease with no known cause or cure.• Symptoms that increase in number and severity with lifespan averaging 7-10 years from onset of symptoms or 3 years from diagnosis.• No disease-altering or life saving treatments at this time.

THE COST FOR AN MSA PATIENT:• An average of $44,500/year in primary and secondary costs according to a 2011 study. That is 36% of a typical family's annual income.

WE WILL RAISE AWARENESS AND RESEARCH DOLLARS WITH:• Fundraisers and raffles.• Education opportunities, support groups and discussion groups.• Sponsors (like you), ticket sales, silent auction of blues and basketball items.• Entertainment events with live music, childrens’ events.• All proceeds will benefit the MSA Coalition.

Each business also has the opportunity to have its logo, along with the Multiple System Atrophy Coalition logo, on a banner for display purposes. Size of logo is dependent on sponsorship level, as follows:

• 2”X4” LOGO FOR THE $500 PURPLE GARNET SPONSOR• 3”X5” LOGO FOR THE $1000 TAAFFEITE SPONSOR• 4”X6” LOGO FOR THE $1500 ALEXANDRITE SPONSOR

Logos will also be displayed on all publicity materials, on the website, on the live-streaming of the event, and on any DVD produced.

Learn about the disease and why it is called "Parkinson's on steroids" and "The Beast." Listen to medical professionals, caregivers and MSA patients as they share information about and experiences with this rare disease during the event. You may well become a rare disease warrior.

WHAT THE FUTURE CAN LOOK LIKE WITH YOUR SUPPORT:Neurology 88: June 6, 2017 – Pathologic Confirmation of Retinal Ganglion Cell Loss in Multiple System Atrophy

Why is this a look at the future? If researchers identify a method to diagnose MSA early then current and future treatment options can target the disease earlier in its progression. In this case three ladies, one in particular, helped lead to a research program now funded in part by the Michael J Fox Foundation. Their eyes are helping us “see” changes in the ganglion nerve of patients with MSA. Early diagnosis means earlier treatment – and a better opportunity to develop a treatment or cure.

THE MULTIPLE SYSTEM ATROPHY • (MSA) COALITION9935-D REA ROAD, #212 • CHARLOTTE, NC 28277

FRONT AND BACK PANELS

Page 2: FRONT AND BACK PANELSmsabgon.org/images/BEAT MSA TRIFOLD 2019.pdf · MULTIPLE SYSTEM ATROPHY (MSA) IS: • A progressive neurodegenerative disease that impacts the autonomic nervouse

ALEXANDRITE: $10,000BENEFITS: Your 4" X 6" logo and a statement answering the question "Why we support this important cause?" will be at the top of or placed strategically in any publicity and/or social media campaign, including when appropriate social media links with MSA patients and care partners; VIP seating for 8 reserved for you and friends or colleagues. Opportunity to meet artists. Platinum sponsors will receive semi-annual reports from the Gettin' the Word Out! Committee with updates on activities.

TAAFFEITE: $5,000BENEFITS: Your 3" X 5" logo and a statement answering the question "Why we support this important cause?" will be included in any publicity and/or social media campaigns; VIP seating for 8 reserved for you and friends or colleagues. These sponsors will receive a semi-annual summary of activities.

AUSTIN CRAWFORD

Austin is a 46 year-old rural citizen who greatly reflects the values of his Illinois hometown. He simultaneously served as a Watseka auxiliary police officer, Milford volunteer fireman, EMT and full time street superintendent and EMT-1 for Hoopeston Hospital. He has been a regular fixture around car shows and motorcycle rides. Highly talented with raw steel and with a wonderful creative streak, he and wife Amy, who he had met on a blind date, were settling into life in Milford.

That all changed because of a rare and terminal disease with which he was diagnosed. MSA, multiple system atrophy, the doctor said and with that Austin knew he had but one option; “I have a lot to look forward to… I'm going to be fighting.” To see him, to meet him and have any interaction with him is to understand the power of positive thinking. And yet as he states in a video made to raise MSA awareness, “Never take each day for granted.”

Austin's desire to give back, to recognize as he says at one point that caretakers are impacted more than the patient is a sentiment many MSA patients express to loved ones and friends. That shouldn't be the case. Help him and a growing number of advocates bring awareness to MSA.

MARY COLLEEN KELLERMAN

Every MSA patient faces the decision to donate or not donate the brain. An autopsy of the brain is the only way an MSA diagnosis can be confirmed and the brain tissue is preserved and made available for future research.

When Mary Colleen Kellerman, aka “the Queen”, passed away in February 2016 after an 8-year MSA journey she donated her brain and her eyes. The autopsy of her brain confirmed her doctor's clinical diagnosis. She was an MSA-Cerebellar patient.

Her eyes were donated in response to a request by a guest speaker at the MSA Coalition's 2014 Conference. Three years later researchers at NYU's Langone Medical Center announced her eyes and the eyes of two other female MSA patients confirmed a hypothesis they were testing to identify a way to make an early diagnosis of MSA. That study has now become a clinical trial testing whether this can be the first confirmed method for early diagnosis of MSA.

If so a woman who suffered through five years of misdiagnoses will have made it possible for a person to be diagnosed much, much earlier. What a legacy!

GARNET: $2,500BENEFITS: Your 2" X 4" logo and a statement answering the question "Why we support this important cause?" will be placed on publicity materials; preferred seating for 6 will be reserved for you and friends or colleagues. Ongoing sharing: Updates will be provided that will keep you up-to-date with the results of your generous support.

INSIDE PANELS