Yearly Archives: 2023

Sticking With Msa – Wouter Peelaerts, Phd (Leuven, Belgium)

Multiple System Atrophy (MSA) is a rare brain disorder that until recently was largely ignored by the research community. MSA is a rapidly progressing neurodegenerative disease caused by a decline of the body’s most basic and vital functions including breathing, digestion, urination, controlling blood pressure and movement. It is not known how MSA arises, and no environmental or genetic contributors have been identified. Several mechanisms are believed to contribute to the disease process.

Brain inflammation, metabolic failure and protein accumulation are just some of the most important disease mechanisms and targeting all of these underlying features might be required to stop MSA from progressing. No disease-modifying drug currently exists for MSA and treatments are purely symptomatic.

Over the last two decades, interest in MSA research has increased within the academic and biopharmaceutical fields, which can be attributed to several reasons. In the late nineties, clumps of a protein called ‘alpha-synuclein’ were discovered inside brain cells. Alpha-synuclein was discovered to be a disease hallmark and a key brain lesion in people with MSA.

After this discovery research into MSA accelerated. A second catalyst appeared ten years later, when a new research hypothesis emerged. This research hypothesis, which initially sprang from other degenerative brain research, involving Parkinson and Alzheimer disease, was coined the “prion-like” hypothesis and showed striking similarities with how MSA might occur.

The prion-like hypothesis raises a new and revolutionary idea in the neurodegenerative sciences. It examines the question of whether a protein can acquire a different shape that can cause disease to spread from one cell to the next – or one brain region to another. A slow and progressive but also vicious cycle then occurs where incorrectly folded proteins spread throughout the central nervous system causing cell loss along its path. This spread usually follows a disease-specific pattern because these sticky, abnormal proteins will disseminate along a path that is laid out between vulnerable connections, guided by inflammatory and metabolic cues, within the central nervous system. As a result, different areas within the nervous system become progressively affected, resulting in the typical symptoms that sequentially develop in MSA.

It can be hard to imagine how a protein misfolds, becomes sticky, starts to clump and cause cell damage because this is indeed quite abstract. There are over 50,000 different proteins in our body, 30,000 of which are present in our brain. Each of those proteins have their own task, and in order for us to be healthy, all of them have to properly and meticulously perform their task. In fact, forcing proteins to become sticky is something we do on a daily basis, for instance when we’re cooking. When boiling an egg, soluble proteins are turned insoluble, or sticky. During a five-minute boiling process, all of the liquid, soluble proteins in the egg form strong almost irreversible chemical bonds with other proteins, resulting in a large solid mass of clumped, sticky protein. As a result, you get a hard-boiled egg.

Intriguingly, some of the 30,000 proteins in our brain exist at concentrations that are so high that they have a natural tendency to stick together. Our brain has multiple natural defense mechanisms that prevent this clumping from happening. However, during aging, natural lines of defense become impaired, the immune system weakens, metabolic deficits arise, and that, along with other reasons we do not fully understand, allow some of these proteins to start clumping and disrupt the communication between cells.

Research into MSA has been very challenging, but the reason that sticky proteins have been so fascinating is that because out of 30,000 the proteins in our brain, one sticks out: alpha-synuclein. Clumps of alpha-synuclein, are invariably found inside sick cells of the brain, the spinal cord and certain specialized cells that directly connect the central nervous system with different organs, such as the intestines, heart, lungs, or the urinary system. It is thought that these sticky proteins can physically move from one cell to next, where they convert normal protein into bad ones, making healthy cells sick (which gets us to the very essence of the prion-like hypothesis).

The alpha-synuclein protein thus play an important role in the MSA disease process, but clumps of alpha synuclein protein are also found in brain cells of people that have Parkinson disease or Lewy Body Dementia. The fact that this one protein, alpha-synuclein, is involved in these seemingly different diseases hasn’t always made complete sense. What we have only discovered recently is that alpha-synuclein proteins tend to stick together in various ways so that they build different structures. In our food analogy, try to think again about cooking eggs: we can do much more than just boiling them. We can make them scrambled, sunny side up, medium, or well done – we can make different preparations by using the same protein. Research has shown that alpha-synuclein protein can stick together in different ways as well. For example, when we take the sticky clumps of protein that are formed in the brain of people with Parkinson disease and put them under the microscope they look like spaghetti. When we look at those found in the brain of people that have Multiple System Atrophy, they look flat and twisted, like tagliatelle, another type of pasta.

Why is it so important to know all this? Well, altogether, it has given us crucial clues as to why diseases like Parkinson Disease and MSA are so different but more importantly, how we can distinguish, diagnose and treat them. It also raises the idea that a single drug could be used for the treatment of multiple brain diseases. For instance, a drug that targets the sticky protein, reduces brain inflammation or improves metabolism could be used for treating MSA but also other brain disorders.

Emerging research has given us new and important insights that have dramatically deepened our understanding of MSA. MSA is not a genetic disease so challenges for the future will be to investigate how MSA is triggered, how it originates and where these sticky proteins in the central or peripheral nervous system originate. That way, if we are able to identify environmental risk factors, or risk genes, that would facilitate the disease to happen, we could start treatment much earlier and potentially slow its progression.

In conclusion, we need to stick with MSA and bring the disease to the forefront, through patient advocacy and scientific research. This is desperately needed for patients, their family and their caregivers. This will also accelerate our search for improved diagnoses and new drugs that could slow disease progression and eventually, stop the disease in its tracks or even reverse its course.

Online Groups & Video Chat Support Sessions Guidelines

MSA UNITED FACEBOOK GROUPS

 & VIDEO CHAT SUPPORT MEETINGS GUIDELINES

(These policies are subject to change without public notice. Your continued membership in a Defeat MSA Alliance & MSA United associated group implies consent to these policies.)

1) CONTENT:

Content on Defeat MSA Alliance and MSA United associated charity websites and social media pages are contributed by volunteers and other users and thus, cannot be regarded as medical advice. The contents on associated pages and social media (such as text, graphics, images, information obtained from third parties, etc), and other material contained on its websites (hereinafter “Content”) are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking such advice because of something you have read on any social media platform or any Defeat MSA Alliance or MSA United associated website.

Reliance on any information and/or Content provided by Defeat MSA and MSA United volunteers, moderators, administrators or others appearing on Defeat MSA and MSA United associated websites and social media platforms at the invitation of the administrators or other visitors is solely at your own risk. Defeat MSA and MSA United volunteer staff take no responsibility for, does not expressly or implicitly endorse, and does not assume any liability for, any content on any Defeat MSA or MSA United website or associated social media platform. Further, there are no representations or warranties of any kind, express or implied with respect to any content.

2) RESEARCH PARTICIPATION:

Participation in any research studies that one may learn about via perusing a Defeat MSA or MSA United associated website or social media platform is completely optional. Defeat MSA Alliance and MSA United only function is to disseminate information. It cannot recommend any course of treatment or any particular diagnosis.

3) DATA POLICY & PRIVACY:

For our data and privacy policy, please refer to this page on OUR PRIVACY GUIDELINES.

If you have any specific questions about our privacy policy, please contact INFO@DEFEATMSA.ORG

Before posting a message, every user should be aware that posting might share possibly confidential information to be linked to personal identifiers (the user name and Facebook profile information a member chooses to provide). This information will become available to others and no one knows the identity or the motivation of those accessing the information. Posted messages can also be found by search engines (e.g., Google). It is therefore important to be careful when disseminating personal information (for example name or phone number) or when it concerns the privacy of relatives, especially children. In addition, every member should be aware that some of their own posts can be included in the responses of other participants, and can, therefore, could be impossible to remove from Facebook date collection processes. It is advisable to weigh the potential benefits of participation in this online community with attendant risks to the confidentiality of information. Careful consideration should be given by users before agreeing to disclose location any information. Due to the nature of the diseases as being rare and the possible isolation of members, by disclosing location information, it may be possible that users can be identified.

4) YOUR COMMITMENTS TO DEFEAT MSA and MSA UNITED CHARITIES:

We are committed to keeping Defeat MSA and MSA United associated websites and social media platforms, a safe and supportive environment for everyone, so in using any of these websites or platforms, you are making the following commitments:

• You will not act under a pseudonym in any of the groups or on any pages.
• You will not offer medical advice:

Messages on groups or on pages must be for informational purposes only. You must not offer, or be perceived to be offering, medical advice. The information posted by users is often partial, and may only cover one aspect of a person’s illness(es) or experience(s). You will do your best to avoid generalizing from personal experience(s) and will clearly indicate if and when you are sharing your own personal story. Any information relating to therapy or diagnosis, even if it comes from users who could be considered to have ‘expert knowledge’ of a disease, must be received with caution. Only your physician is authorized to offer and/or confirm medical diagnosis and/or advice.

• You will not recommend treatments:

Treatment options should only be provided by a qualified physician and should depend on the particulars of each individual’s medical history. The treatment choices of other users must be respected and group members should never claim that a specific treatment is the only one that is effective for a particular disease. Group members must also be careful when sharing their experience(s) with products and/or practices that have not been properly evaluated for the disease or symptom that is the subject of discussion within the group.

• You will not post any unauthorized advertising messages:

Any form of advertising is not allowed in the groups. This applies with respect to treatments, clinical trials, registries, physicians, care facilities, etc.

• You will be respectful of other group members. You will do this by: respecting the opinions, beliefs, and differences of other members; being polite and keeping a measured tone in all exchanges; refraining from undermining the morale of other members; not posting hateful, threatening, violent or otherwise inappropriate content; not spreading rumors or content that may harm or endanger the health and safety of others.
• You will not post content or engage in behavior that is illegal:

All members must comply with the laws of their country. Particular emphasis must be on avoiding the spread of illegal content, respecting the privacy of other members, and protecting copyright and other intellectual property laws.

• You will not collect users’ content or information from this website for your own personal or commercial use. This applies to any and all means of collection (e.g. manual, automated, direct and/or indirect).

Administrators and other volunteers reserve the right to delete postings or remove any member or participant who violates these restrictions and commitments and this may be done in their sole and exclusive discretion. Administrators may, in accordance with their legal obligations, act quickly to remove data or make access impossible when they have knowledge from a third party that a member has circulated illegal content via Defeat MSA Alliance and MSA United associated groups or pages.

• You will not use the groups to air your personal grievances about other group members, group administrators or any leaders or activists within the MSA community. Group admins have the total discretion to remove postings that violate this policy and to remove the offenders if necessary from the group.
  
• You will not post comments that attempt to embarass or “punish” other group members, group administrators, charity leaders or activists. You will not use the groups to lobby others to “side” with you on any grievance you have with others within the group or outside of it. If you have a greivance, our suggestion is for you to address it to that person directly and appropriately. The group forums are not to be used as a sounding board for a group member’s personal issues.
  
• If you wish to leave the group, do so, but announcing to everyone that you plan to leave the group because of some perceived injustice in order to garner support or solicit members to request you to stay is inappropriate behavior for any online peer support groups.
• You will not suggest group members join other groups (in forum posts) that are not officially sanctioned by the charity or post links to other groups or pages that are not officially sanctioned by the sponsoring charity.
• You will not promote one doctor over another to group members. This includes avoid advocating to fund one lab, institution, grant proposal or researcher over another. Also, you will not market or sell any doctors or researcher’s books to group members.
  

5) VIDEO CHAT SUPPORT MEETINGS:

As of August 20, Defeat MSA and MSA United charities sponsor the following video chat (“Support Group Sessions” or SGS). These are peer support meetings.

• MSA Life Affirmations Video Chat Meeting (Patients Only – Global)
  

• MSA Caregivers Journey Video Chat Meeting (Current Caregivers Only – Global)
  

• MSA Current Spouses Video Chat Meeting (Current Spouses Only – Global)

• MSA in AU and NZ  Video Chat Meeting (Patients Only)
  

• MSA in NZ and AU Video Chat Meeting (Caregivers Only)

• MSA Canada Video Chat Meeting (Patients & Caregivers)

• MSA Grief Peer Video Chat Meeting

• MSA Widows/Widowers Video Chat Meeting

All Defeat MSA and MSA United Support Group Sessions aim to provide a regular way for members to come together to support one another. Each SGS is a PRIVATE messenger room chat. No conversation is recorded, available after the chat or available to others outside the group. All discussion in this group is confidential. No images or recordings may be taken.

For a complete list of those Facebook groups (in which the video chat Support Group Sessions take place), visit here: https://defeatmsa.org/patient-programs/#facebook-online-groups

OR call us: 1 855 KICK-MSA (1 855 542-5672)

6) GROUP GUIDELINES:

1. Complete guidelines on all Defeat MSA and MSA United related video chat support group sessions (whether on our Hub platform or within any of our Facebook groups), please visit the website below. Your participation in any of Defeat MSA Alliance and MSA United chat support groups imply consent to confidentiality and our group guidelines.
2. Timeliness: Please make certain to arrive by 15 minutes after the start time, after that time, the chat room will be locked so that we can allow the group members to speak uninterrupted. Also, if you access the video chat group, from your mobile phone, please make sure to keep the phone steady and not to be moving about with the phone. Our focus in the group will be on the people present. The length of the meeting depends on the moderator, but usually no meeting should last more than 60 minutes. The moderator along with the host charity director should decide the date for the next meeting.
3. Multi-tasking, Moving Camera and No One Under 18: Please avoid multi-tasking for the support group hour. By attending the group, each member is consenting to be on camera, we cannot permit others to be on camera if they haven’t consented, i.e. children, other family members, etc. Please also avoid moving around the room, moving the camera or phone or leaving from the view of the camera. Absolutely no one other than the person that consented to join the meeting (RSVP’d) should be on camera! Also, no one under 18 should be on camera at all – for any reason at any time.
4. Respect: All comments must be respectful of all members. Participation in the group is at the discretion of the group administrators, moderators or other volunteers coordinated by Defeat MSA/MSA United. We have zero tolerance for any form of bullying whatsoever.
5. RSVP Required: Every member must RSVP before entering any Support Group Sessions. RSVP allows people to read/review the group guidelines and for us to be confident that members are familiar with the group guidelines.
6. Moderator Authority: Each video chat group moderator has complete and total discretion to remove or accept people into a group.
7. Sales and Solicitations: This forum may not be used for personal fundraising, sales, solicitation by individuals or groups, other than official Defeat MSA and MSA United sponsored activities.
8. Lobbying: Members may not lobby others in the group to fund a specific researcher, his/her particular type of research or his/her lab over others. Postings that excessively support particular researchers, their research or their lab may be removed at the discretion of group admins, Defeat MSA and MSA United staff or volunteers.
9. Sharing Treatments: While Defeat MSA Alliance and MSA United appreciates the good intentions of the MSA community, the sharing of prescribed medication or treatments, in most jurisdictions, violates the law, thus this group cannot be used for such activity.
10. Group or Support Session Membership: Participation in and/or admission to the group is entirely at the discretion of group administrators. Group admins are not obligated to provide reasons for not admitting an invitee, terminating a member or removing a post. However, due process will be followed in all cases.
11. Advertisement and Promotions: Please avoid advertising, promoting other groups, suggesting members join other groups, using the group to fund-raise for other organizations or to fund-raise privately for individuals, for specific researchers or for the selling of their books, their treatment plans or diet plans.
12. No Professional Counselors Available: None of the administrators or group members are trained professionals, thus, we cannot provide personal, marriage or family counseling.
13. Implied Consent: Your participation in any of our support group sessions implies that you consent to all our support guidelines listed on our associated websites and in our associated peer support Facebook groups.
14. No Medical Advice: The material in this group is for informational purposes only and should not be used to diagnose or recommend treatment. Defeat MSA Alliance and MSA United make no warranty as to the accuracy or relevance of the information in this group. Every member should consult with a doctor or other health care professional for diagnosis and/or treatment.
15. Harming Oneself or Others: If you find that you are experiencing depression, then we strongly recommend that you to seek help. Anyone that posts anything that gives any hint that they may harm themselves or other people, that posting/individual will be referred to appropriate local authorities.

We are all in this together! Let’s speak as a true family – with one voice and one heart!