Monday, May 13, 2019

Educational Seminar for Patients, Family Members and Caregivers


Multiple Sclerosis: 
Educational Seminar for Patients, Family Members and Caregivers 
Cleveland Clinic Administrative Campus, Building 4 
3175 Science Park Drive ● Beachwood, OH 
Presentations by members of the Cleveland Clinic Mellen Center health care team will highlight important aspects of MS care including the future of MS care and how you can help manage your MS. 
Objectives 
 Describe multiple sclerosis treatment and standards of care in the 21st century 
 Discuss the benefits of comprehensive care utilizing the health care team approach 
 Recognize the importance of health care and self-care interventions 
 
Agenda 
8:00-9:00 am Registration/Breakfast/Exhibits 
9:00-9:05 am Welcome Marie Namey, APRN, MSCN 
9:05-10:00 am The Future of MS Care Robert Bermel, MD 
10:00-10:15 am Refreshment Break / Exhibits 
10:15-11:00 am Identifying Needs of Patients and Caregivers Deborah Miller, PhD, LISW 
11:00-11:15 am Refreshment Break / Exhibits 
11:15 -12:15 pm Breakout Sessions 
Breakout 1 
Wellness: Gaining control over MS with healthy living Malissa Ayers, PA-C 
Breakout 2 
Occupational Therapy: Protecting your function and independence Aaron Nicka, OTR/L, CDRS 
Registration is Complimentary 
Please register to attend this seminar by June 19, 2019 at 

Saturday, May 11, 2019

Advertise on this website.

Kenzig.MS for the first time will be offering the sale of targeted Banner advertising at the top of all pages. 
Currently we use google ads but will be changing over to targeted ads for Facilities, MS related organizations and drug companies. 

Ads in banner rotation will cost $1000 for 6 months and appear throughout entire site Kenzig.ms website and possibly on virtualtrials.com/btlinks (brain tumor links) 

Portions of proceeds will be donated to MS organizations and virtualtrials.com.

Banner ad creation is available for the additional cost of $250 per banner ad. I have extensive experience and have been creating, buying and selling websites since 1996.

Contact jim@kenzig.org if interested.

Sunday, April 28, 2019

Multiple Sclerosis Drug Company Links to Live Learning Events




 The following are links to pages where you can sign up for Live Events put on by the Drug Companies who make Multiple Sclerosis drugs that are in your area to learn about Multiple Sclerosis Treatments and Therapies.    

The events are usually presented by prominent area doctors in the field and also some have patients who have taken the drug tell personal stories. 

Most of these events include a lunch or dinner and provide a great opportunity to learn new things and to meet with others who also have MS.   



Understand that Multiple Sclerosis drugs are very expensive, so drug vendors are usually more than happy to supply an extravagant meal along with their presentation. I have personally attended many live events and have always learned something from them, met great people (and usually never walked away hungry. lol.)

Company Link

Aubagio - Aubagio is an Oral Disease Modifying Drug made by Genzyme also known as Teriflunomide. Genzyme hosts several Live Events throughout the year that you can attend       

     Aubagio Live Events Page
 

Ocrevus is an infusion drug for both relapsing and progressive Multiple Sclerosis. The first infusion is split over 2 weeks and consecutive infusions are given every six months. No PML has been reported as yet with this drug however it does carry some risk. 

Ocrevus Live Events Page
Image result for gilenya

Gilenya - Gilenya is an Oral Disease Modifying Drug Made by Novartis also know by the name Fingolimod. Novartis hosts both Online and Live events you can attend to learn about their offerings.

  Gilenya Live Events Page

  

Rebif - Rebif is an injectable Disease Modifying Drug made by EMD Serono also known as interferon beta 1-a. Rebif has a very informative website called MSLifelines. MSLifelines hosts many live and online events that allow you to learn more about Multiple Sclerosis and Rebif. EMD Serono usually requires that you are taking Rebif for you to attend an event but some are for anyone with MS. The Come to Chat events are especially good and very informative and help patients learn coping mechanisms.








Rebif Live Events Page
AMPYRA






Ampyra - Ampyra, also known as "The Walking Pill" and by the drug name dafampridine, is one of the few types of Drugs that actually attempt to help MS symptoms made by the drug company Acorda.  Ampyra is made to help patients walk faster and achieve better balance. It does help some patients achieve much better results. 
Ampyra Live Events Page 

plegridy logoPlegridy - Plegridy is an injectable Disease Modifying Drug made by Biogen also known as peginterferon beta-a. The drug is similar to Avonex only it is not given as frequently.
Plegridy Live Events Page





Acthar Gel - Acthar is an injectable drug also know as corticotropin by Questcor that is used to treat relapses in those with MS in lieue of taking steroids. Acthar may be a treatment option for you. 
Achtar Live Events Page
 lemtrada logo



Lemtrada is an injectable infusion taken for a full week and only once per year. It is also know as alemtuzumab and like Tysabri is a monoclonal antibody drug.  Lemtrada is produced by Genzyme. 




tysabri

TYSABRI® (natalizumab) is a once monthly infusion prescription medicine used to treat adults with relapsing  forms of Multiple Sclerosis (MS).  Tysabri has one of the highest success ratings in preventing new lesions but carries considerable risks of PML. 
Tysabri Live Events Page 





Tecfidera - Tecfidera is a recent addition to the disease modifying drugs. It is a pill that is usually taken twice per day. The company that makes Tecfidera is the same one that makes Tysabri. Biogen. Tecfidera also carries a slight risk of PML so you will want to learn about this drug before you consider it. It has worked quite well for those patients receiving the drug.
Tecfidera Live Events Page

Copaxone is an injectable drug taken daily or three times per week


 
Mayzent Logo




________________________

Now Approved
MAVENCLAD® (cladribine) tablets is indicated for the treatment of relapsing forms of multiple sclerosis (MS), to include relapsing-remitting disease and active secondary progressive disease, in adults     
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MSWorld.org hosts an events page to find MS Events
MSWorld.org Events Page

Friday, April 5, 2019

NEW REFRESH STUDY FOR FATIGUE

If you have MS pleas consider participating in this study.

DETAILS
Type of MS: PPMS|PRMS|RRMS|SPMS
Treatment mode of action: To reduce fatigue
Number of Subjects: 610
Medication: 6-week educational fatigue management course
Location: Illinois|Minnesota|Ohio
Institutions: Case Western Reserve University, University of Minnesota, Dalhousie University Contact Information
Dr. Matthew Plow
1-800-631-3272

Funding:

Patient-Centered Outcomes Research Institute

Description

Participants will engage in a six-week program taught by clinical experts (occupational therapists) over the phone, internet, or in-person. Participants may learn strategies that will empower them to reduce fatigue and reduce the impact of fatigue on quality of life.

Please complete intake form at https://redcap.case.edu/surveys/?s=8LAEJLTFRK
 

Monday, April 1, 2019

FDA approves new MS Drug that is a pill for both Relapsing and Progressive MS! Also approves Mavenclad.

The FDA has approved a drug by Novartis called Mayzent. That is a pill for both relapsing and progressive forms of Multiple Sclerosis. This is the first pill of its kind that can treat both forms. For more information check out the manufacturers website at http://www.mayzent.com
The FDA also approved a new pill from EMD Serono called Mavenclad. See https://www.mavenclad.com/en/now-approved/index for more info.