A Special February Meeting

Now with Valentine’s Day getting near
Maybe you’d like to bring someone dear
Who might like to learn a little something new
A hand to hold and support for you
We will meet as usual, same place, same time,
So SAVE THE DATE on ~ February 1st from 7-9

Please feel free to invite a special friend, family member or caregiver to come with you.
We’ve planned the meeting around involving and educating others in our lives. If you have any specific needs that you‘d like covered at this meeting, please let us know.

Agent Orange and Chiari Malformation

Here is a video link of two sisters who struggle with Chiari Malformation:

http://www.chicagotribune.com/videobeta/?watchId=9fa27737-b729-4a32-aa78-b4e09b0170ec

Interestingly, their father was a Vietnam veteran who was exposed to Agent Orange.

For additional information from US Dept of Veterans Affairs:
http://www.publichealth.va.gov/exposures/agentorange/benefits_children.asp

We will be following this story closely. Also if you have any information, as to who to contact, would you please send us an email, so we can forward this information to others.

Thank you

Meetings for 2010

It is hard to believe our support group is coming up on its very 1st Anniversary. Our first meeting had only three attendees and now we have grown over 1000%.

As we enter into our second year, we would like to know how we can better serve you. Cyndi and I are putting together a schedule for the CM/SM Support Group meetings and we would like to have your input. We are gathering information now so that you can get the most out of your support group. We would like for you to share your ideas or thoughts for the upcoming year.

In 2009 we had neurosurgeon, Dr. Rifai, speak to our group. We learned a great deal about Chiari and Syringomyelia. We would like to bring in more speakers for the coming year, do you have a special interest or topic that you would like presented?

We would like to know what is of special benefit to you. Perhaps a speaker is not something you are interested in, but rather a group discussion of a particular topic. Please let us know.

We hope to balance the support group with a speaker every other month. However, we will adjust the calendar based on what you have to tell us. Even if you have not attended the support group meeting, we would like to hear from you, too. Your input is valuable to us.

If you could let me know, just email me as soon as you are able. We plan to have a rough draft of the 2010 Calendar available for the next meeting, Monday, Dec 7th.

The Chiari Walk

For September

We will not have a support group meeting for September.

The first Monday in September is the 7th which happens to be Labor Day.

However, there will be a Chiari Walk volunteer meeting scheduled a couple weeks before the Walk. As details become available, we will let you know.

Have a safe Labor Day Weekend!

Enjoy.

Conquer Chiari Walk Across America

Wicker Park, Highland, Lake County, IN
Saturday, September 26, 2009
Register 10 am
Walk 11 am

In cities and towns across America, thousands of people just like you will be walking to help Conquer Chiari find a cure for Chiari Malformation. A walk to make a difference in the lives of those affected by CM and raise essential funds for research, education, and treatment options.


Walk Across America is a half day of fun, food, and friendship with activities for the whole family!

Take steps with us to bring hope to those who suffer with Chiari Malformation and related disorders. There are many ways to support the walk:

To find out more, click here

If you are interested in more information, volunteer opportunities or have questions, please contact Cyndi Vanek.

Making a difference starts with one step.