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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

Advice and Tips from the Multiple System Atrophy Community

Advice and Tips from the Multiple System Atrophy Community

One of the great things about social media is that it connects people with similar rare diseases forming virtual communities. These groups can provide real comfort, education and advice from others going through the same experience. This shared advice and tips are shared at the multiple system atrophy patient and family conferenceexperience is valuable in so many ways, including:

  • Avoiding the feeling of being alone with a disorder nobody has heard about
  • Forming real and lasting bonds with others affected by MSA
  • Being able to ask questions or seek advice about any aspect of daily life with MSA
  • Sharing your experience, concerns, daily wins and losses, laughter, tears

As an example of sharing on social media and to generate actual tips and advice for this blog post we posted the question on The MSA Coalition Facebook page:

What is your one best tip or piece of advice for other MSA patients and/or caregivers?

Here are the first few responses we have received:

  • Remember it is the MSA taking over as your loved one acts very different than normally. Keep the good memories close!
  • Keeping a sense of humor to balance out the deep sadness that comes with having this disease or a loved one having this disease. One of my mom’s favorite things that I do is rub her feet and lower legs with almond oil and lavender oil.
  • Keep up with physical therapy for as long as you can do it (or afford it), and (here’s the tough one) try to stay positive.
  • Please keep a notebook of doctors’ visits, therapy, medication
  • Go slow, don’t take mobility risks, enjoy life while you can, always try to remember the good stuff, and not the bad, breathe!🙂 Sorry, more than one tip!
  • Exercise, physical therapy, & voice therapy as it helps with keeping swallowing muscles stronger long
  • Ask for help. I didn’t have family I could rely on so I found a couple of co-workers that I asked to help support me, they are now more than co-workers
  • Live life to the fullest. Do not let the disease define you.
  • Come together as a family unit. No one person can make it through alone. Also laugh when you can enjoy the time you have with them. Under the physical symptoms is still the person who was there before they got sick.
  • Just laugh and keep going until you can’t go anymore
  • Always remember the person you’re looking after, inside, is still the same funny wonderful person they were before, and and treat them with dignity.
  • Some advice for caregivers like myself, DO NOT BE AFRAID TO ASK FOR HELP! And, you have to take care of you in the process or you will literally be worn down to nothing
  • Patience and love. You are not alone
    My husband passed away from this terrible disease in 2009. He was a sick for 5 I do know how difficult it is.
  • Don’t hold back any information from your kids. They must know what you as the patient or caregiver is going through or have to do. You cannot protect them from this. If you do you may find yourself in the wrong on their eyes. Be strong and out spoken and reach out when you need help.
  • Find support to help you as the caretaker! It takes a tribe! Cherish every minute, have no regrets!
  • Talk about the end early on. Have a plan before it’s too late for the person with MSA to make the decisions. Once that’s out of the way live life to its fullest!

We encourage you to join one or more MSA Facebook support groups that are linked to The MSA Coalition page to connect with others and share ideas for coping. Look for the group tab and you’ll see public and private groups, regional groups and special interest groups. A good group to start with is this private group which is a mix of both patients and care partners:

The Multiple System Atrophy Coalition has a vibrant and engaged following on Facebook. With more than 14,200 followers it is the largest MSA group on social media. We strongly recommend “Liking” and “Following” our page and then engaging in conversations via the comment section. MSA is very rare but there is no need to go it alone. Also, a great way to generate awareness for this little-known disease is to “Share” our posts to your own timeline

MSA Holiday Hope for a Cure Fundraising Tips

MSA Holiday Hope for a Cure Fundraising Tips

To help inspire your Multiple System Atrophy fundraising efforts this Holiday season, the MSA Coalition has compiled a list of very practical fundraising tips that make it easy and simple to be successful!

Important Dates to Know:

  • The Crowdrise Holiday Challenge runs from Nov. 28, 2017 – Jan. 3, 2018.
  • November 28, 2017 is #GivingTuesday (The most important giving day of the year!)

Step 1: Set Up Your 2017 Holiday Hope for a Cure Fundraising Page

  1. Sign up or log in to Crowdrise to create your new “2017 Holiday Hope for a Cure” fundraising page on the MSA Coalition Crowdrise team. To set up your fundraising page:
  2. Click on the above link and select the purple button that states “Join The Team & Create Your Own Fundraiser.”
  3. Create a Crowdrise account or sign in to your existing account (if you have donated or raised money on Crowdrise before.)
  4. Click the purple “Join the Team” button in the pop up field.
  5. Go to your email inbox where you will get an email from Crowdrise. Read their three tips and click on the orange “START CROWDRISING” button.
  6. Agree to the terms. You will now be on your own personal MSA Coalition Holiday Hope for a Cure fundraising portal.

Step 2: Personalize Your “Holiday Hope for a Cure” Crowdrise Page

  1. Customize your page. We highly recommend customizing your page. If you don’t edit your page the default is the MSA Coalition’s content from our master Holiday Hope for A Cure page, It is good, but your personal story will have more impact with your network.
  2. Near the top of your Crowdrise portal select “Edit Fundraiser”
  3. Upload pictures that help show your MSA story.
  4. If you have a video that tells your MSA story add a YouTube or Vimeo URL link so people can view your video.
  5. Set a realistic and achievable goal for the amount you want to raise.
    1. For most fundraisers $500 to $1,000 is very reasonable and achievable. Our average fundraiser in past CrowdRise Holiday Challenges raised $1,600 – but, most of our fundraisers have raised under $1,000. Even if you only raise $100 or less your efforts will be appreciated!
  6. Tell your personal MSA story with as much emotion and passion as possible. Upload your own pictures and be sure they appear first when your page is opened. If you include a short video to tell your story this is even better! Not only will your story help you raise money, but it will also spread awareness about Multiple System Atrophy. It shouldn’t take more than 5-10 minutes to get set up.
  7. View your finished fundraising page. On the left side of your portal you will see a navigation option – “View.” Click on the link and you will be taken to your actual page.
    1. Review your finished page. If you spot any typos or want to make changes you can go back to your portal and go to edits. If you are happy with your page, you have one last step before you share it with your contacts….
  8. Be the first person to donate to your own fundraiser. If you don’t donate to your own fundraiser can you really expect your contacts to donate? Donate, even if it’s just $10 and don’t share your fundraiser page until your donation is posted.
  9. Don’t start fundraising until #GivingTuesday
    1. Put a note in your calendar as a reminder for November 28, 2017.
    2. Start your day on November 28 by posting your fundraiser on Facebook and sending your fundraising URL to everybody you know via email.
    3. Send an email reminder 2-3 times during the day on #GivingTuesday.

Step 3: Share! Share! Share! Start Raising Money

At the bottom of your live fundraising page you will see sharing buttons for Facebook and Twitter. There is also a “Share” button where you will find the URL link to your fundraising page.

  1. The three easiest ways to spread the word and ask for donations are:
    1. EMAIL your personal fundraiser page link with a personal note to everyone in your contact list.
    2. SHARE your personal fundraiser link on all of your social media accounts, especially Facebook, Twitter, and LinkedIn.
    3. The knock-it-out-of-the-park tactic: Call your best contacts and talk to them about your fundraiser and ask them for a donation. Follow up the call with a personal thank you email that includes the link to your fundraiser.
  2. Be sure to ask everybody you know to contribute and be sure they know the story as to why you are fundraising. Emotion and passion will move your contacts to action.
    1. Family
    2. Friends
    3. Neighbors
    4. Church members
    5. Social groups
    6. Work colleagues
    7. Classmates
    8. And more!
  3. Be Persistent! Ask more than one time, or even two times. Just because your email went unanswered doesn’t mean your friends aren’t interested in helping. The holidays are a busy time of the year and people are swamped with all those emails about holiday deals. Send an email each week making the ask for a donation to help keep your fundraiser top of mind. Post it to your social pages every few days. Your friends will appreciate the reminders.
  4. Don’t fundraise alone. Recruit your family members and closest friends to spread the word about your fundraiser to their contacts.
  5. Host a Holiday fundraiser party. In lieu of hostess gifts or wine ask your guests for a donation to your fundraiser. Remember to include your fundraiser information in the invitation. You can also have a laptop out with your fundraising page open.
  6. 6. Be sure to let everyone know their tax-deductible gift will be matched dollar for dollar until we surpass our matching gift pledges. (The final matching pledge total will be available on the MSA Coalition’s 2017 Holiday Hope for a Cure Crowdrise page.)
To my fellow children of MSA Warriors: You can still make a difference!

To my fellow children of MSA Warriors: You can still make a difference!


By Sarah Duffy-Clinton (In memory of Deb Duffy)

bitemeDeb Duffy suffered from Multiple System AtrophyWe watched our mothers and fathers courageously battle this unforgiving disease. We need to continue to courageously fight this disease in our loved ones honor; fight for funding to help researchers find answers and continue to support those who are impacted. And the best part of being a small army, is that every person can make a huge difference.

All children of MSA Warriors: Please create a fundraiser page NOW as part of the MSA Coalition’s Holiday Challenge Campaign, it takes just 5 minutes! Click “Fundraise for this Campaign” here:


Upload a few photos and write a short paragraph about your parent and their struggle. Then take a few minutes over the next 4 weeks to share the link to your page with your contacts on social media and in email. Every donation, no matter the amount, makes an impact. We need you to help continue the fight. Because, to quote my courageous mother who fought this disease with all that she had, “MSA can BITE ME!”

My mom was a kick ass fundraiser! She loved calling people and asking for money for a cause she was passionate about. Our passionate cause now is to help the MSA Coalition “Find a cure for MSA and help those currently struggling”. Now it’s our turn to give back to my mom… to countless moms and dads who have fought the good fight and to those who are now fighting – our MSA Warriors!

Mom fought this evil disease up to the end, refusing to give up hope that the doctors were only 80% certain that Multiple System Atrophy was the diagnosis (definitive diagnosis can only be made post mortem). She always said, “someone has to be in that 20% group, why not me.” While we all held out hope that she was right, unfortunately that was not the case. That is one of the hardest parts of this disease: the diagnosis. It can take years to diagnose, once all other potential diagnoses have been ruled out…and you can chase that diagnosis all over the world, but in the end, there is no treatment, no cure, nothing to slow down the progression…and this is where YOU come in.

The Multiple System Atrophy Coalition is LEADING THE FIGHT TO CURE MULTIPLE SYSTEM ATROPHY while providing COMPASSIONATE SUPPORT and INFORMATIVE RESOURCES to benefit families affected by this serious, progressively disabling, neurodegenerative disease.

Any amount helps fund research that could eventually lead to a treatment and ultimately a CURE!

And it wouldn’t be a Deb Duffy plea without this phrase:


Thank you for your support!!!!”

Click to Visit Sarah Duffy-Clinton’s Fundraiser Page