Myasthenia Gravis Association of Kansas City

Rating: 4.5 stars   8 reviews

Issues: Cancer

Location: 6400 Prospect Avenue-East, Suite 300A Kansas City MO 64132 USA

Mission: The Myasthenia Gravis Association is dedicated to improving the quality of life for those affected by this autoimmune, neuromuscular disease, through awareness, education and patient services.
Geographic areas served: Kansas & Missouri
Programs: The two MGA Clinics are a collaborative effort with local Neurologists who specialize in the treatment of MG. Physician offices make an effort to schedule MG patients the same day of the week so that MGA staff and volunteers can meet with patients/clients in the physician’s office before their appointment. A new diagnosis or coping with a chronic disease can cause anxiety and fear. Meeting with a MGA staff member or volunteer offers an informal, friendly and less medical opportunity for sharing. The purpose of the clinics is:• Provide support to MG clients and referrals to human services• Provide “New Member Packets” for newly diagnosed members• Provide opportunities to discuss coping with symptoms• Provide opportunities to discuss wellness techniques & healthy lifestyle• Provide informational material regarding links to MG and other health-related resources

Write a Review
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 4 stars  

2 people found this review helpful

I have lived with Myasthenia Gravis for about 14 years. Fortunately, when I was first having symptoms, our family Dr. "guessed" that it was MG & sent me to a neurologist. I have never had a crisis so bad that I've ended up in the hospital (thank God), but my life (dong simple activities like eating and talking) is affected, in varying degrees. Since the beginning of my diagnosis, I have been very grateful for the opportunity to go to a MG support group meeting, even if no one has symptoms exactly like mine.

I've personally experienced the results of this organization in...

giving me help when I felt the need to change neurologists.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

7 people found this review helpful

I am a 37 year old mother of 3 that lives everyday fighting Myastenia Gravis, I have had open heart surgery to remove a thyomoma, I was not told much about the disease, until 4 years later when I am in a crisis and being treated as a acholoic and paramedics are insisting that I have taken a over dose of narcotics... I could not move could not talk and hearing everything that was happing thinking that I was going to die.. doctors not knowing how to treat, until my husband told them that I take mestanon, and that I had MG, the ER physician had to google what it was, I since by the nurse that also googled what myasthenia was gave me this wonderful support system, I have now found out that there is someone else going through what I go though every day the struggles that i have just to move and to sometimes even to breath, thank you so much for the care and the resourses that you give us when know one else even knows what are disease is

I've personally experienced the results of this organization in...

when i needed to find a doctor

If I had to make changes to this organization, I would...

to make it more accessable for every one

What I've enjoyed the most about my experience with this nonprofit is...

the information given

The kinds of staff and volunteers that I met were...

wonderful and helpful

If this organization had 10 million bucks, it could...

educate more people on what MG is and how to treat it

Ways to make it better...

I would have known sooner how to access it

In my opinion, the biggest challenges facing this organization are...

reaching all of the patients

One thing I'd also say is that...

that I needed help and found resources to help me with the local chapters

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

11 people found this review helpful

At age 69 I was diagnosed as having MG, and subsequentially went thru a major MG crisis. I had no knowlewdge of the MG, it's origin, effects, etc. I was told of a support group called the MGA and contacted them immediately. Thru their assistance I not only learned of the disease, but was also put in contact with the finest neurologists in my area that worked expressly with MG patients. This organizaetion is vital sourcce of information and assistence to MG patients and their care givers

I've personally experienced the results of this organization in...

Access to neuologists who work expressly with MG patients

What I've enjoyed the most about my experience with this nonprofit is...

The comradrie of the group

The kinds of staff and volunteers that I met were...

very knowldgeable and great support

If this organization had 10 million bucks, it could...

Help work toward finding causes and possibly cures for this disease

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-3-01

Was this review helpful? 
Rating: 5 stars  

6 people found this review helpful

I have had MG 16 years. When one eye closed, I checked with several local doctors, who could not identify the problem then. Mayo Clinic Neurologist quickly diagnosed the MG, with a simple Tensilon Test. Then a friend recommended the Kansas City Myasthenia Gravis Association. The local chapter provided a free clinic; provided a Neurologist that could diagnose and treat the symptoms. They continue to support patients and family with clinics; monthly education meetings; and contacts with others who have MG.

I've personally experienced the results of this organization in...

When first diagnosed with Myasthenia Gravis, I attended the free clinic; which is offered monthly. Since connecting with a Neurologist who knows Myasthenia Gravis, I attend the Monthly local Myasthenia Gravis Association meetings, for new information.

What I've enjoyed the most about my experience with this nonprofit is...

They really care about patients and family.

The kinds of staff and volunteers that I met were...

Helpful, friendly, supportive

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

9 people found this review helpful

My experience with the Myasthenia Gravis Assoc has been wonderful. Since the disease was considered fairly rare when I was diagnosed just over 2 years ago, I had difficulty finding information. I was referred to MGA and received information on treatment, medications,clinical research and other resources. This was invaluable because I was also able to interact with other MGA patients and learn from their experiences. So I became a Board member.

I've personally experienced the results of this organization in...

See above

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2007-1-01

Was this review helpful? 
Rating: 4 stars  

8 people found this review helpful

I was diagnosed with MG at 40 years of age. I was scared because I had never heard of it and I think a neurologist is one doctor you don't really want to have to go see. I have 2 young children, I am young! The MGA Support Group calmed me down, helped me understand MG and I have always felt that they could help me through this. The newsletter is great, in the years that I have had MG, it has grown as the Association has. They seem to have attracted some very sharp individuals who have really increased the energy and reach of this organization. Bravo!

I've personally experienced the results of this organization in...

Information, support groups, fund raisers.

The kinds of staff and volunteers that I met were...

Caring, loving.

If this organization had 10 million bucks, it could...

Cure MG!

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2009-1-01

Was this review helpful? 
Rating: 4 stars  

11 people found this review helpful

I contracted MG in February of this year. It has affected my speech,neck muscles and jaw primarily. The doctor that diagnosed this told me they have no idea how you contract MG. I immediatel;y looked to see if there were any organizations that could help me with more information so I could understand my condition. I contacted the local chapet of MG here in Kansas City and I have never been more pleased with the response of "anything we can do to help you" along with all kinds of helpful literature as well. The local chapter also has regular meetings where you can not only learn more about MG but meet other people who have been afflicted with this disease.

I've personally experienced the results of this organization in...

In all the kind reponse to my MG. I am 78 and MG has dramatically altered my life. The MG organization has helped me cope with my situation with their literature and meetings that they coduct at a local Hospital here in Kansas City

If I had to make changes to this organization, I would...

I would not want to make any changes

What I've enjoyed the most about my experience with this nonprofit is...

Their willing to help you understand your MG disease better

The kinds of staff and volunteers that I met were...

very professional and extremely helpful in answering questions and providing literature on this nuero-muscular disease

If this organization had 10 million bucks, it could...

I think ten million dollars would be more in order for the National headquarters to channel assistance down to the local chapters. Knowledge is power to the people that have contracted this Muscular disease and self help through literature is always good

Ways to make it better...

I have been very pleased, so far with my contacts with the Myathenia Gravis Assoc.

In my opinion, the biggest challenges facing this organization are...

Organizations like this are small and are always in need of additional funds in order to assist the population that have contracted Myalthenia Gravis.

One thing I'd also say is that...

Anything that you can do to help the MG Association, I know. will be most appreciated

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-1-01

Was this review helpful? 
Rating: 4 stars  

8 people found this review helpful

My son was diagnosed with MG while he was a cadet at West Point in the summer of his junior year. West Point provided minimal help Walter Reed was outstanding and they recommended, along with others, the MG Association. We asked for, and received, valuable dietary and disease control information until my son could be treated at the University of Kansas Medical Center. The MG Association is composed of some great folks who like to help those in need.

I've personally experienced the results of this organization in...

My son got a thymectomy and is in remission. He is serving in Iraq as a combat arms platoon leader. The advice of the MGA was instrumental in my son's recovery.

What I've enjoyed the most about my experience with this nonprofit is...

the great information they provide.

If this organization had 10 million bucks, it could...

personally help all MG patients.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2007-6-01

Was this review helpful?