Colorado Support Group May 20th. meeting

Happy Myositis Awareness Month! The Myositis Association (TMA) has declared the month of May as Myositis Awareness Month. This is the time when TMA is asking members of all the KIT (Support) Groups to enhance myositis awareness by talking to our families, coworkers and friends (including Facebook friends and Twitter followers) about myositis; and to hold special events and meetings.

To celebrate this month, we are pleased to announce that Dr. Namita Goyal will be the speaker at our next meeting, which will be on Saturday, May 20, 2017. Dr Goyal is an Associate Clinical Professor of Neurology at the University of California at Irvine, specializes in neuromuscular medicine and is a member of TMA’s Medical Advisory Board. She will be sharing with us information about some of the current research on myositis treatments and then opening the rest of the meeting for questions from our KIT Group members.

Information about the meeting is as follows:

When: May 20, 2017. 10 AM – 12 Noon.

Where: Swedish Medical Center, 501 E. Hampden Ave. Englewood, CO 80113.

Room: Spruce C (on the 2nd Floor). The 2nd floor is the same room as the cafeteria. Spruce C is past all the other conference rooms,

Speaker: Namita Goyal, MD.

Light refreshments will be served.

There is no cost for the meeting. You do not need to RSVP. Family members and care-givers are most welcome.

Dr. Goyal spoke at the 2016 TMA Annual Myositis Patient Conference. You can see her session on Understanding Myositis Medications by clicking here.


August 6th meeting

Our next meeting will be on Saturday, August 6th, from 10:00 AM to 12:00 Noon, in room Spruce C on the 2nd Floor of the Swedish Medical Center, 501 E. Hampden Avenue, Englewood, CO 80113. Cookies and drinks will be served.


We are delighted to have F. W, Rick Meyers as our speaker. Rick is a former Episcopal priest who now works as a professional speaker, life coach and blogger.


Thanks to John Mozer for organizing this. In John’s words, “I have heard Rick speak and have read several of his blogs. He is a wonderful speaker and will share with us many of his insights on how to deal with the joys, difficulties and challenges of life. I know his talk will be a great benefit to all of us who suffer from myositis or have family members or friends who suffer from this debilitating disease.”


Please bring your family members and friends to hear Rick speak — his talk will benefit everyone.


To learn more about Rick and to read some of his amazing blogs, please click here.

shopping for a cause

It’s that time of year when our attention turns to shopping for the holidays. For those of us who hate the malls this time of year or whose disability prevents us getting around the shops easily, online shopping has become a great convenience.  If you do shop online, did you know that you could be making a donation to the TMA at no cost to you!

Amazon Smile
Thanks to Sheila for a timely reminder at our November meeting. If you use Amazon, they have a service called Amazon Smile. When you use Amazon Smile to make your purchase a small percentage of the purchase price goes to the charity of your choice, including the TMA. This is at no cost to you. You are still paying the same price for your purchase. We ran a blog piece before on how to set TMA your preferred charity. Click here for details.

TMA has announced they are now partnered with iGive. is the Internet’s first shopping mall where purchases benefit the shopper’s favorite cause. Today over 1,700 stores participate. When you register with iGive you are asked for what charity you wish donations to go to and select The Myositis Association. To find out more and what stores participate, click here.

Dermatomyositis trial is looking for recruits

Idera Pharmaceuticals is looking for recruits to enroll in s Phase II study of IMO-8400 in adult dermatomyositis patients. In total they expect to enroll 48 patients across 20 sites in the US and the UK.

One of the recruiting sites is in Phoenix, Arizona under the direction of Dr. Todd Levine. Dr. Levine has spoken to our support group a couple of years ago and has been on the TMA Medical Advisory Board. He has been to the forefront for a lot of clinical studies into drugs treating myositis, including Rituxan and Acthar.

More information can be found at the clinical trials website. Click here

Also the TMA website has information about the trial. Click here

In addition I have received information packs from Idera about the clinical trials. If interested in these packs please let me know.

2016 Meeting Schedule

We have confirmed the dates for the 2016 meetings. There are as follows:

Saturday, February 6th. 10 AM-Noon
Saturday, May 7th. 10 AM-Noon
Saturday, August 6th. 10 AM-Noon
Saturday, November 5th. 10 AM-Noon

All meetings are at the Swedish Hospital in Spruce C.

We are also hoping to schedule a meeting in Colorado Springs in 2016.

Any updates to our schedule including any speakers we will reserve will be updated on the schedules page. Please click here

November Colorado Support Group meeting

When: Nov. 7th. 10 AM – 12 PM

Where: Swedish Medical Center,   501 E Hampden Ave.  Englewood, CO  80113.

Room: Spruce C

Speaker:  Dr. Tammy White specializes in Physical Therapy. She comes highly recommended from one of our IBM patients.

There will also be a discussion on the recent TMA Annual Conference in Orlando.

Directions to the Swedish Medical Center can be found by clicking here (or click SCHEDULE tab on top of page).

3rd Annual Picnic in the Park

Ruby Hill Sign

We are pleased to announce our 3rd. Annual Picnic in the Park to highlight National Myositis Awareness Day.

When: Saturday, Sept. 19th.

Time: 12 Noon – 3 PM

Where: Ruby Hill Park, 1200 W Florida Ave. Denver CO 80223

Pavilion: Picnic Area 2

The park is situated off Santa Fe Drive just South of I-25 in Denver. Picnic Area 2 is at the North end of the park. From Santa Fe Drive go West on W Florida Avenue. The entrance is on the left, opposite South Osage Street:

Zoomed mapZoomed Image

A map to Ruby Hill Park can be found by clicking here.

Chicken nuggets from Chick-fil-A will be provided as well as bottled water. This is a pot-luck and we encourage you to sign up to bring food and your own drinks. The sign-up sheet for the pot-luck can be found by clicking here.

To sign-up for the pot-luck please cut and paste into your browser.

For the Ruby Hill Park map cut and paste into your browser.

Unfortunately WordPress links don’t work with some browsers or incompatible with some browser plug-ins.

August Meeting update

We are delighted to announce that the speaker for the Saturday, August 1, 2015 meeting of the Colorado Myositis KIT (Support) Group will be Rick Watson, Co-Founder and CEO of A Wiser Mind, an organization that provides emotional and brain activation therapies to patients suffering from Anxiety, Alzheimer’s, Grief, Life Transitions, Depression, Dementia and Stroke. To obtain more information about A Wiser Mind, you can go to their website by clicking here

Rick will give a presentation on “The nature of memory” that will cover some suggestions on how to keep our brains sharp and healthy as possible.

Meeting Details:

When: August 1st 10 AM – 12 PM

Where: Swedish Medical Center,   501 E Hampden Ave.  Englewood, CO  80113.

Room: Spruce C

A big thanks to John Mozer for organizing this.

disabled driving controls

Mary Matoba from Performance Mobility spoke to our group at our February meeting about driving with disabilities. She covered a wide range of subjects from transporting wheelchairs to hand controls.

The Performance Mobility website, click here, is a great resource for all aspects of driving with disabilities from car lifts, seat transfers, wheelchair locking devices to adapted vehicles.

There are two main types of devices to safely securing a wheelchair inside a vehicle. There is the tie-down type system like Sure-Lok, click here. This type can be a bit labor intensive to secure all the tie-downs. The second type is the floor docking systems as provided by Q’Straint, click here, and EZ Lock, click here.

The main part of the meeting was talking about vehicles that have been adapted for disabled driving and using hand-controls.

The first thing is to work with a Certified Driving Rehab Specialist (CDRS) who will work with you to figure out what kind of adaptive driving controls you will require. The Association for Driver Rehabilitation Specialists (ADED), click here, has a directory of CDRS specialists. The CDRS will require a doctor prescription that you qualify to drive a vehicle that will be modified for driving with disabilities.

When going to a company that will modify a vehicle for your needs, it is important to go with one that belongs to the National Mobility Equipment Dealers Association (NMEDA), click here.

Performance Mobility works with the largest companies such as Vantage Mobility International (VMI), click here, and Braun Ability, click here, to get the vehicle that is right for you.

They also work with Sure Grip, the leader in hand controls for cars. Their web-site, please click here, has some great videos on the bottom of the screen on the various types of hand controls.

Unfortunately having a vehicle adapted for disabled driving is not cheap. However there are financial assistance programs available:

  • Disability Blog, click here, has a list of government/state/veteran and automobile manufacturer programs available.
  • VMI, click here, also lists the current automobile manufacturer programs and other resources.
  • The University of Colorado – School of Medicine, click here, lists resources both local and national.


1st Colorado Support Group meeting of the year!

Please join us on Saturday (Feb. 7th) at 10 AM for our first Myositis Support Group meeting of 2015.

Speaker: Mary Matoba from Performance Mobility to speak on hand controls for cars.

Note: We will not have a car with hand controls at the meeting, but rather a vehicle adapted for wheelchair access.

For more details on our meetings please click here.