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Meeting A Mission One Support Line Call At A Time

Meeting A Mission One Support Line Call At A Time

Written by Larry Kellerman

I am the MSA Coalition support line volunteer for a coalition representing a very rare and devastating disease. I have found being that person who can share resources, advice, a shoulder to cry on and the voice of hope brings people back again and again to share their thoughts and questions. Every call helps me meet the mission my deceased wife and I developed during her last months suffering from multiple system atrophy (MSA), a rare and terminal neurodegenerative disease. “Help others who are on this da#ned journey” was her lament that led to me dedicating my life to be a support for MSA patients and caregivers.

One caller in particular is the reason for this story. I’ll call him Gary but that is not his real name. He first called the call line about 18 months ago and after our first conversation he asked if he could call back if he had any additional questions or just needed to talk. I told him it would be my pleasure to be there for him and put his contact information in my contacts list.

Over these last 18 months we’ve probably talked a dozen times. He’d call when the journey was getting difficult or when he’d see a change in his wife’s condition and needed to have some reassurance. Over those months we became comfortable talking to each other and a couple of times advice I shared helped make a positive difference in his wife’s treatment and condition. During that same period of time I heard in his voice a resolve grow that was not there at first, a resolve to be a positive part of the MSA journey.

Two weeks ago he called and told me how quickly his wife had taken a turn for the worse. She was now unable to hold herself up and leaned to one side, had difficulty eating and was very fatigued. We talked about what that might mean and I shared some advice heard at a recent support group meeting; “If there’s a change for the worse in an MSA patient it’s quite likely to be a urinary tract infection.” He was sure they were giving her antibiotics to prevent a UTI but would check. When the conversation ended I could hear in his voice that worried sound of “could this be the last time a symptom impacts her like this?”

He called four days later and when I took the call I could hear cheerful voices and laughter. He told me he wanted me to hear how crazy it was now that his wife was home and the children were there visiting. He even introduced me to his wife and we got to exchange a few words. Her voice was weak but I could understand everything she said. He got back on the line and said he just wanted to share that family time with me. Talk about feeling humbled as I hung up.

Early Friday evening the phone rang and Gary’s name appeared. I immediately answered and said “Hi.” He said to me “Larry, she passed away today, and we were all here when she did.” He shared some of the information about those last hours with the family and calling the hospice nurse to come out, only to have his MSA wife pass before the nurse arrived. I think at that point I was the more sentimental of the two of us, trying to hold back the tears of “S#*t, another MSA patient taken from us.”

Then he shared something that made my night, week and maybe even my year. We had talked a couple of times during that 18 months about his wife donating her brain. Just days before she passed he called a nearby research center that has a brain bank. Over a few hours they confirmed his wife’s approval of the harvest, contacted the funeral home and pathologist who would complete the harvest and made the process very smooth for Gary and his wife’s donation.

He told me he had asked them how many MSA brains they have in their bank and they said “less than twenty.”

I paused for a short time before words would come out of my mouth. “Gary” I said. “One of those brains is my wife’s. You have donated to the same brain bank that has my wife’s brain.”

One day in the life of a support line volunteer.

Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer

Giving Tuesday – A Critical Day for Multiple System Atrophy Research

Giving Tuesday – A Critical Day for Multiple System Atrophy Research

If you want to have the biggest impact possible in the quest to find better diagnostic tools, treatments and hopefully a cure for multiple system atrophy #GivingTuesday (November 28, 2017) is the most important day of the year!

100% of every dollar raised, matched, and won on #GivingTuesday will go directly into the MSA Coalition Research Grant Program! If you help us fundraise the total could reach $200,000 or more!

Don’t stay on the sidelines during this critical day!

Read on to learn more….

History of Giving Tuesday

#GivingTuesday has been celebrated each year since 2012, on the first Tuesday after Thanksgiving (in the U.S.). It symbolizes the start of the Holiday giving season, which for most charities represents the time of the year when the biggest portion of their donations are received. The MSA Coalition has participated each year through its partnership with the CrowdRise Holiday Challenge. Last year the MSA Coalition raised more than 10% of its total revenue for the year on #GivingTuesday.

The CrowdRise Holiday Challenge, A Great Event For MSA

This year’s CrowdRise Holiday Challenge runs from November 21 – January 3, 2018. It is being

The Multiple System Atrophy Coalition's 2017 Holiday Hope for a Cure fundraiser on Crowdrise

Join The MSA COalition’s 2017 Holiday Hope For A Cure Team

sponsored by the Newman’s Own Foundation and is offering $500,000 in prize money to the top charities. The winner of the 6-week challenge will receive $150,000 and the top 10 causes will receive prize money. There are also bonus prizes throughout the Challenge with another $100,000 being distributed. Plus, there are separate prizes for #GivingTuesday totaling another $100,000. The top 3 causes will receive grand prizes.

Who wants to see a significant portion of these awards coming into the MSA Coalition for research, education and awareness initiatives?

If you are saying “Me! Me! Me!” read on…

Why the MSA Coalition Needs You on Giving Tuesday

We all know multiple system atrophy is a very rare and little known disease. Because of this it is very difficult to motivate outsiders to give to the MSA cause, let alone to fundraise. Grass roots, at least for now, is our single most effective way to raise money. That means, we need YOU to participate.

Last year (2016), the MSA Coalition had 100 families actively participate in the CrowdRise Holiday Challenge. On Giving Tuesday we raised just over $90,000, which was good enough for third place for the day. Unfortunately, two other charities did better and the Coalition did not win any of the prize money for the day. On the bright side, The MSA Coalition maintained its third place status throughout the CrowdRise Holiday Challenge and in the end secured the Third Place prize of $25,000 which was added on to the Challenge total of over $300,000 raised for MSA.

That’s right, with just 100 families participating the MSA Coalition raised over $300,000 dollars in 6 weeks and added another $25,000 in prize money to that total. Imagine what we could do if 200 families participated! What about 300, 400 or even 500! This is why we need you!

1: Sign Up to Help Us Raise and Win Money This Holiday Season

Joining our team is easy and will only take a few minutes

MSA Coalition 2017 Holiday Hope For A Cure Team Members

2017 Holiday Hope for a Cure Team Members

Join the MSA Coalition’s 2017 Holiday Hope for a Cure Team

2: Like and Follow The MSA Coalition’s Facebook Page for Volunteers

Don’t fundraise alone! Become a part of the MSA Coalition team of fundraising volunteers. We

Diane & Elaine Offer Hope & Advocacy for those with MSA

will post lots of great tips, updates and key dates to help make your fundraiser a success! Likewise, share your ideas, questions and success stories to help the whole team become better!

Like The MSA Coalition Volunteers Facebook Page

3: Sign Up for Special Giving Tuesday Newsletters

  • How to Set Up a CrowdRise Holiday Challenge Fundraiser
  • Tips on Fundraising Easily and Successfully
  • Success Stories From Other MSA fundraisers
  • Alerts About Key Fundraising Dates and Bonus Challenges
  • Fundraising Updates

If you are on the fence or nervous about fundraising, sign up for our newsletter and select the Holiday Challenge under fundraising as an interest. It is not a commitment to fundraise, it is only a commitment to learn more!

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