WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, January 21, 2012

MitoAction.org and UMDF Activities in Houston

So after I blasted Houston in my last post for social climbing,catty behavior, and lack of Medical care, I figured I should do my part to spread the word for Mito Families to get involved.

I am excited to announce that MitoAction.org is hosting a Mito social in Katy, Texas at the end of February! This is the first meeting, so everyone is on equal footing :-) I know a few folks that are going, and it should be a couple of good hours of being able to vent, share and get to know other families struggling with Mito. I am looking forward to grownup time, and seeing lots of little ones, remember,I am having serious empty nest around here!


Dear friends in Texas,

Do you want to meet other families dealing with mitochondrial disease or those who are in the process of a diagnosis? Make connections with others in your area going through the same things? Here’s your chance!

You are invited to Mitochondri-ya’ll, a Mito Patient & Family Social! This low-key, relaxed, fun gathering hosted by MitoAction & Kristi Wees will allow you to share stories and resources, give and get support, make new friends, and realize you’re not alone on this difficult journey.

All ages are welcome.

Date: Saturday, Feb. 25

Time: 10 a.m. - 1 p.m.

Place: Memorial Hermann Hospital-Katy

Tiger Room A & B

23900 Katy Freeway (I-10)

Katy, TX 77494

Please RSVP by Feb. 22 to support@mitoaction.org.

MitoAction’s mission is to improve the quality of life for everyone affected by mitochondrial disease through support, education, outreach, and advocacy initiatives. We believe in supporting and empowering our Mito community today.

For more information, contact MitoAction Membership & Support Coordinator Ginger DeShaney at support@mitoaction.org or Social host Kristi Wees at kristiwees@gmail.com.

Please RSVP and join us. We look forward to seeing you there!




--
Ginger DeShaney
Membership & Support Coordinator
888-MITOACTION (888-648-6228)



Would you like to host a Mito Social?

It's easy! Here's what the host will do:

• Set a date for the event.

• Secure space for the Social, such as a hospital, church basement, community center, or school.

• Buy snacks and beverages for the event using a stipend from MitoAction.

• Take care of the day-of setup and cleanup.

• Send MitoAction photos of your Social and your sign-in sheet.

Here's what MitoAction will do:

• Send email invitations to Mito patients and families in your area.

• Manage the RSVPs.

• Provide a stipend for snacks and beverages.

• Provide sign-in sheets and Mito materials to have available at your event.

• Post photos and a write-up of your Social on our Facebook page.

To sign up to host a Social or for more information, contact Ginger DeShaney at support@mitoaction.org.




Yesterday, just a few hours after my Epic Rant about the lack of involvement in Mito Care in Houston, I found a UMDF announcement in my email- talk about karma! It appears that Texas Children's is finally getting onboard and making an effort to educate about Mito(please tell they are working on their Drs. first!). UMDF is looking for volunteers to sit a booth during a special needs resource fair. I did notice however, that it is the Texas Department of State Health Services providing funding for the event- are they connected to CPS? I will have to look that up- call me paranoid, but even though Abby is grown, I have a bit of distrust after all the news articles about mito families and CPS and Texas Childrens in the newspaper. Let us hope this is a sign that FINALLY our Medical Schools and Hospital systems are at least willing to admit that Mito is a real and devastating disease. Only time will tell.


Hello UMDF Texas!!!
The Houston Chapter of the UMDF and the National Office have been approached by our Baylor/Texas Children's Hospital contact to assist with Resource Fairs in select Texas cities to promote mitochondrial disease awareness.
The Baylor/Texas Children's contact is planning resource fairs with special needs in 8 locations in Texas this year -- she would like to have a UMDF patient/family to host the booth (serve as a volunteer to distribute materials and answer questions). UMDF will provide the materials!
If you live in one of the following areas and are available on the date provided, please email me at kara@umdf.org so that I can pull together all interested parties for our contact.
This is a GREAT opportunity to spread awareness across Texas and to help families with special needs gain valuable information about mitochondrial disease to better care for their loved ones. Special Thanks to Baylor/Texas Children's for giving us this wonderful chance to share information with others across Texas -- this has been made possible through funding from the Texas Department of State Health Services!
Lubbock, Tx - Saturday, February 4, 2012
El Paso, Tx - Saturday, March 3, 2012
McAllen, Tx - Saturday, April 21, 2012
Midland/Odessa, Tx - Saturday, April 28, 2012
Brownsville, Tx - Tuesday, May 1, 2012
San Antonio, Tx - Saturday, June 23, 2012
Tyler, Tx - Saturday, June 30, 2012
Houston - Date to be Announced!
Again, please email me ASAP to let me know if you are interested and available to help out...Thank you!
Yours Toward a Cure,
Kara Strittmatter, Director of Chapter and Membership Services
UMDF National
kara@umdf.org
Visit www.energyforlifewalk.org for Walk updates -
Houston's Walk (www.energyforlifewalk.org/houston) is February 4!!!
Mark your Calendars for Mitochondrial Medicine 2012 (June 13-16, 2012) - visit www.umdf.org/symposium for updates!


"Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10."

The United Mitochondrial Disease Foundation
8085 Saltsburg Road, Suite 201 | Pittsburgh, PA 15239
Toll-Free: 888-317-8633 | F: 412-793-6477 | info@umdf.org

To promote research and education for the diagnosis, treatment and cure of mitochondrial disorders
and to provide support to affected individuals and families.


So, two opportunities in Houston for patients and families to get involved- Lets jump in and be heard! If we all yell together and DEMAND that our supposed top notch Medical Center get it together and learn about Mito so we can quit traveling for care, we can be heard and make a difference.








1 comments:

Elizabeth said...

Looking forward to meeting you at the social! I am enjoying reading your blog and have learned a lot!

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