by MSA Coalition | Sep 17, 2019 | MSA-Blog
Guest Blog by MSA patient Jackie Vandenberg
I wrote this letter to my friends and family so they would better know how to communicate with me due to speech issues associated with multiple system atrophy. Others might find it helpful in communicating with their loved ones as well.
Dear friends and family,
I always appreciate when friends and family come to visit. I noticed lately that some people struggle knowing how to talk with me as my ability to communicate decreases. I have brainstormed a few things on how to communicate with me and other MSA patients struggling with the speech:
1) I enjoy socializing even though I cannot speak back. I’m interested and am listening when others tell me about themselves. I like to hear about how people are doing, their families, hobbies, vacations, experiences, weekend activities, etc.
2) I wish to be spoken to as a person and an adult. Please speak to me normally by not using slower or louder speech, or a reduced vocabulary and sentence structures. I like to be part of the conversation by making eye contact and being spoken to directly.
3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.
4) When we’re together you can talk or not talk, either is fine. I’m comfortable with quiet too.
5) I use a piece of cardboard with the alphabet written out to communicate, we call it a Ouija Board. I can point to letters to spell out words. I need someone else to hold the cardboard and adjust it as I go. It can take a while for me to spell out sentences so I appreciate everyone’s patience. It’s ok if you don’t understand a word the first few times, as Tom and Adrianne can attest to.
6) When I’m using the Dynovox communication device it’s ok to fix letters/autocorrect for me.
7) A symptom of MSA is excessive drooling. If you’re comfortable doing so you can use a tissue or washcloth to wipe my mouth.
8) The best way to contact me to make plans is on Tom’s cell phone through call or text. I check my email and Facebook messenger every couple of days and am happy to get messages there too.
I hope these eight tips on how to communicate to those with MSA are helpful for everyone! I love having friends and family visit and appreciate all of our time together.
A Multiple System Atrophy Awareness Video
Featuring Jackie VanDenberg
About The MSA Coalition
The Multiple System Atrophy (MSA) Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people living with MSA. The four pillars of our mission include:
Education: Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information.
Trusted Emotional Support: Providing patients and caregivers with trusted and compassionate emotional support.
Community: Building a sense of community by connecting and unifying people affected by MSA.
Funding Patient-Centric MSA Research: Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure.
by MSA Coalition | Jun 11, 2018 | MSA-Blog
With “6 Tips to Fundraise for MSA” you can become an important member of the cause! The Multiple System Atrophy Coalition has made great strides to create an era of hope for those suffering from multiple system atrophy. With hopes to foster collaboration within our community, the MSA Coalition encourages its supporters to advocate for those with MSA. As our organization expands in skills, research, and impact, we are looking to the MSA community to participate in and organize live fundraiser events. Everybody in the MSA community needs to become a fundraiser. It is by far the most realistic way multiple system atrophy will receive the funding it needs to achieve major breakthroughs in diagnosis, treatment, and outcomes.
We have created 6 tips to fundraise for MSA and listed them below. Getting started on your own fundraiser for MSA is the most impactful way you can help the cause. Together, we can make a difference as we work to provide real hope for those with multiple system atrophy.
1. Choose An Event Format or Theme
By hosting a fundraiser for MSA, we are hoping to inspire awareness and participation. In order to encourage action at these events, creativity is key! A unique and entertaining event theme will
The Williams Family at their MSA Fundraiser
boost registrations and strengthen impact for MSA! First consider your target audience. Who do you want to invite to your fundraiser? Would your demographic be more inclined to support a 5K race, fashion show, or benefit dinner?
Land on an event theme that you feel will build excitement. Here’s a few ideas to get you started.
- • Golf Tournament: Find a local golf course and request that they donate a few less popular hours to your cause. Athletic events are a great way to get your supporters outside and create a little friendly competition!
- • Pancake Breakfast: Who wouldn’t support MSA when there’s food available? Ask a few volunteers to assist in the preparation and cooking, and ensure that there are options for everyone — vegan, gluten-free, and sugar-free foods included!
- • Carnival: Invest in whatever you feel is appropriate. Carousels are fun, but homemade booths and costumes make for a more personalized event experience.
Need more inspiration? Here’s a list of fundraiser ideas you can use.
2. Establish a Budget
Managing your event’s budget isn’t easy. Perhaps the most important factor is starting the budgeting process early and giving yourself ample time to research potential costs. Put together a rough estimate of the capital you have to work with, but make sure to leave room for unexpected expenses. These will almost always arise, and you want to ensure you’re covered in an emergency.
Research is crucial! Shop around and get multiple quotes before selecting a vendor. Even if you have found your perfect vendor, they may be willing to price match if you can find something cheaper. As new quotes come in, be sure to update your budget sheet.
Document everything– create an Excel Spreadsheet or Google Sheet from the very beginning. When creating a budget document, be sure to include all income or expenses, no matter how small. Small purchases can easily creep up and control more of your budget than you might think. We recommend using formulas in your spreadsheet, which will minimize any errors in you budget.
3. Choose a Venue
When selecting a venue for your event, try looking beyond your typical event halls or convention centers. Some of the most exciting fundraisers take place at alternative event spaces, like barns, rooftop gardens, or airport hangars. Think creatively, but make sure to ask keep in mind, budget, attendee capacity, discounts, and package (what’s included in the price).
4. Find a Ticketing or Registration Platform
Once you have finalized all the planning details, give your attendees an easy way to register and order tickets. A nonprofit registration platform makes it easy for your potential attendees to pay online and share your event with others. In addition, it is simple to manage donations, ticketing, and marketing.
5. Market Your Event
When tickets are available, it’s time to spread the word and generate excitement for your fundraiser! Create an event on Facebook that you can share on other social media platforms. Followers of your charity can learn more about your event, and share with friends and family. As word spreads, so will MSA awareness. Be sure to include all the details as well as the registration page! Create flyers to gain local attention and be sure to distribute them widely. Free online graphic design websites make it easy to design custom posters without the hassle of software programs.
6. Follow Up and Review
After your event, sit down and determine the pros and cons of your event. What worked and what didn’t? Noting things that you can fix will make it that much easier to plan your next fundraiser.
One of the easiest ways to generate feedback is through attendee response. Create a short online survey and email it to those who attended your event. A useful survey is short, sent out quickly, and limited to multiple choice questions. Keeping these factors in mind will produce useful data on your event.
For more information on setting up an MSA Fundraising Event: Visit here!
Please let us know what you think of our blog “6 Tips to Fundraise for MSA” in the comments below! We also encourage you to share your own tips and ideas for fundraising.
by MSA Coalition | May 24, 2018 | MSA-Blog
What is MSA? An Analogy of Neapolitan Ice Cream Can Help Explain
Written by Pam Bower, a volunteer and member of the MSA Coalition Board of Directors.
I first thought of this analogy many years ago to describe Multiple System Atrophy, I’ve modified it a little bit: MSA is like the three flavoured Neapolitan ice cream. Everyone with MSA gets a scoop of the MSA ice cream just as everyone at a birthday party gets a scoop of Neapolitan ice cream in their dish. If you were at the party and looked at your dish and at the dish of the person next to you you would notice that there is not the exact same amount of vanilla, chocolate and strawberry in both of the dishes.
In someone with Multiple System Atrophy, if their symptoms are mainly CEREBELLAR like ataxia (loss of balance), slurred speech or difficulty swallowing they have mostly vanilla ice cream in their dish .
If their symptoms are mainly PARKINSONISM like tremors and slowness of movement they have mostly chocolate ice cream in their dish.
If their symptoms are mainly AUTONOMIC like orthostatic hypotension (low blood pressure when standing) or urinary incontinence or urinary retention or sexual dysfunction they have mostly strawberry ice cream in their dish.
Everyone needs to have some strawberry symptoms to be diagnosed with MSA. On top of this they need to have some vanilla and some chocolate symptoms too. Note that they may have a whole lot of vanilla and a tiny bit of chocolate. If so they are called MSA-C (cerebellar). If they have a whole lot of chocolate and a tiny bit of vanilla they are called MSA-P (parkinsonism).
People with MSA have a changing bowl of ice cream though … their vanilla and chocolate and strawberry amounts increase over time as they develop more symptoms from the cerebellar or the parkinsons or the autonomic sides. … but this will vary from person to person. This is because the disease is spreading throughout the brain. It does not spread exactly the same way in every person.
I hope this helps you understand Multiple System Atrophy a bit better.
Subscribe to the Multiple System Atrophy Coalition’s YouTube channel to view educational videos.
Download the 50+ page document “MSA What You Need to Know” from the Multiple System Atrophy Coalition website.
To find support and educational resources check out the MSA Resources page.
Remember: March is Multiple System Atrophy Awareness month and October 3rd is World MSA Day.
To purchase Multiple System Atrophy t-shirts, hats, awareness bracelets, videos, educational booklets, DVDs and other items please click SHOP FOR MSA GEAR at www.multiplesystematrophy.org
by MSA Coalition | Mar 26, 2018 | MSA-Blog
Hope for multiple system atrophy (MSA) patients has traditionally been tough to come by. From the 1960s, when MSA was first diagnosed (then known as Shy-Drager Syndrome (SDS)) through 2010, progress in understanding the cause and funds for critical research were limited. This is not to say progress was not made. Several research centers with autonomic disorder specialization and scientific organizations like the American Autonomic Society worked diligently conducting research to find the cause, develop diagnostic and symptom treatment protocols, and to test potential therapies. This work now serves as a strong foundational building block.
A New Era of Hope for Multiple System Atrophy
In 2011 the nonprofit SDS/MSA Support Group, which was first established in 1989, made the decision to expand its vision from solely supporting patients and caregivers to a 4-pillar mission which included emotional support for the MSA community, patient and physician education, advocacy and awareness, and encouragement and funding of the most promising multiple system atrophy research. Under the leadership of Don Crouse, Vera James, and Judy Biedenharn, and with the council of Drs. David Robertson and Tom Chelimsky, the organization changed its name to The Multiple System Atrophy Coalition® and embarked on building the premier national charity with world-wide reach for all affected by MSA.
Rebuilding a charity was not an easy task! It took countless hours by a very small group of dedicated volunteers to think through the changes and then implement them. Within a year major progress was made and continues:
- Officially changed the name to The MSA Coalition®
- Built a new website (MultipleSystemAtrophy.org) with a focus on educational content such as MSA – what You Need to Know
- Established the MSA Research Grant Program with dedicated funds and a world-class Scientific Advisory Board (SAB) in charge of vetting all research proposals received by The MSA Coalition.
- Expanding the quality and reach of our Annual Patient and Family Conference, which now exceeds 175 in-person attendees and is live streamed globally to over 3,000 more viewers
- Began expansion of the Board of Directors from five members to fifteen, broadening the range of skills and talents to support our mission.
By the end of 2011 the initial changes were complete and progress was being made. In the years prior to 2012 the charity raised an average of $10,000 to $25,000 per year. Beginning in 2011 with the announcement the new 4-pillar mission donations began to increase.
- 2012 $54,500
- 2013: $206,800
- 2014: $498,100
- 2015: $1,020,000
- 2016: $862,700
- 2017: $939,100
This increase in revenue has given The MSA Coalition the ability to begin making a real difference on behalf of those suffering from MSA. The biggest reason for hope in the eyes of many patients is research. Without research treatments and a cure will never be found. Over the past 4 years the MSA Coalition has funded 36 research grants from around the world totaling $1.6 million. Each and every grant has been scored and vetted by the SAB and many guest reviewers. If there is a potential conflict the reviewer recuses themselves from scoring and discussing that particular project. After the grants are scored and ranked The MSA Coalition Board of Directors reviews and votes to fund the top research grant applications. Where possible, connections on similar proposals are made in an effort to encourage collaborations among researchers and institutions. This process means that only the most promising research is funded by The MSA Coalition. As such, a diverse range of studies have been funded from 25 institutions and 30 researchers in 9 different countries. “Being good stewards of the money raised at the grass-roots level is always at the forefront of every financial decision we make. The MSA Coalition is extremely proud of its transparent and non-biased research grant process,” said Carol Langer, Treasurer of the MSA Coalition.
Other hidden benefits of the MSA Coalition’s research grant program that are bringing new optimism to multiple system atrophy research, include:
- These grants often help fund the work of young investigators meaning they choose to focus their research on MSA rather than other areas.
- Through the diligent work of Pam Bower, The MSA Coalition’s research committee chair, several global collaborations on important research have been started.
- The infusion of grass-roots donated research dollars has provided all MSA researchers with new energy and optimism about finding better diagnostic markers, treatments, and potential cures.
In addition to funding research the MSA Coalition is also leading the push for better global collaboration and data sharing, which will speed the process of improving patients quality of life. In the past few years, The MSA Coalition has provided sponsorship funds for multiple research meetings including primary sponsorship of the past two International MSA Congresses, and MSA specific sessions at both the American and European Autonomic Society Scientific Meetings. These meetings are critical for researchers from around the world.
To further streamline use of resources The MSA Coalition encourages other advocacy organizations, foundations, and large donors to utilize and participate in its established research grant program. Due to the rare nature of MSA there are a limited number of researchers and potential grant applicants. As such, The MSA Coalition desires to share its SAB and grant application process to ensure that research funds from as many MSA charities as possible are being used in the most efficient manner and that researcher time and efforts are not being wasted on duplicative processes and work. Charities and foundations participating in the MSA Coalition research grant process are included as observers in the SAB review process, and can choose to fund the highly scored research proposals that meet their individual criteria for funding. It is an open and transparent review and voting process for all funders. These charities, Foundations, and Individuals have contributed substantially to past MSA Coalition grant programs: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.
To continue building hope for multiple system atrophy, The MSA Coalition is now leading an effort to unite multiple system atrophy charities in a collaborative consortium. On March 1-2, 2018, The MSA Coalition hosted the first ever MSA Global Advocacy Meeting in New York City in conjunction with the 6th International MSA Congress. The meeting, led by Cyndi Roemer, Chair of The MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J Fox Foundation on their research grant program. The meeting also offered breakout sessions on various topics from advocacy, education and support, research, and fundraising. It concluded with sharing of learnings and new ideas and with plans to build a consortium of global cooperation among MSA advocacy organizations.
The past 5 years truly mark the beginning of an era of hope for those suffering from multiple system atrophy. The MSA Coalition promises to continue its transparent, mission driven work to build collaboration among advocates and researchers with the ultimate goal of delivering more than just hope. The desire is to shift from an era of hope to a new era of results that deliver improved and earlier diagnosis, both symptomatic and disease modifying treatments and ultimately a cure to eradicate MSA from the Earth!
Real hope for multiple system atrophy patients is in reach! Support our efforts by fundraising for the MSA cause. We are united to defeat MSA!
How do you think we are doing? Let us know in the comments section!
by MSA Coalition | Mar 19, 2018 | MSA-Blog
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
experience 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 years.so 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: https://www.facebook.com/groups/MSABuddies/
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