Support Forums and Collaborators

Support groups for CTE are slowly emerging. If you are aware of one please let us know so we can post here.

This great Facebook page runs a support group every Tuesday at 7 pm.

https://www.facebook.com/HopeAfterHeadInjury/

Closed Facebook groups are for people who can discuss their sports related brain injury confidentially with others that have the same injury…

https://www.facebook.com/groups/859738284065373/

https://www.facebook.com/groups/108398302515255/

And this closed Facebook group is for CTE and Concussion Caregivers…

https://www.facebook.com/groups/925000350927727/

This is a closed group for support, discussion, sharing of information and venting for those with CTE, TBI, PCS, and ABI. This group is also for the loved ones and caregivers that are taking a ride through this journey with the survivors as well.:

https://www.facebook.com/groups/164998687455984

This is another closed group that may be helpful

https://www.facebook.com/groups/cteawareness/

 

This organization provides guidance and assistance to athletes, both male and female ages 13-24, who have suffered a catastrophic, life altering and/or career ending sports-related injury with mental, physical, and financial support.

POSITIVE-STRIDES.ORG

In Texas:

Neurodegenerative Disease (PSP/CBD/MSA/LBD/CTE) Support Group  

Every 3rd Saturday of the month at 10:30 a.m.

Location: Texas Health Dallas (8200 Walnut Hill Lane) LL Perot Building – Meadows Labs B & C

Topic: We will be splitting this meeting into caregivers and patients; so we can do a perception activity. And then come together to discuss.

RSVP: 214-345-7981 or THDMovementDisorders@TexasHealth.org

 

Neurodegenerative Caregiver, Past & Present, Support Group

Every 3rd Friday of the month at 11:15 a.m.

12:15 p.m. – Lunch – provided by Belmont

Location: Belmont Village on Turtle Creek – 3535 N Hall St. Dallas, TX

Details: All care partners of those effected by neurological disease are welcome! This is a safe space to discuss grief, compassion for the self, and share your stories with those that are, or have, traveled the same path. (The Bistro is available for patients while caregivers are in the meeting.)

RSVP: Catrina Nieser 214-345-7981 or THDMovementDisorders@TexasHealth.org

 

Austin also has a support group and the facilitator is Judi Nudelman at jnudelman51@gmail.com

This following association should provide guidance and support for CTE families:

https://www.biausa.org

 

The Brain Injury Alliance also has help in many states:

Arizona: http://biaaz.org/

Colorado: http://biacolorado.org/

Connecticut: http://www.biact.org/

Idaho: http://www.biaid.org/

Iowahttp://biaia.org/

Minnesota: http://www.braininjurymn.org/

Montana: http://biamt.org/

Nebraska: http://biane.org/

New Jersey: http://bianj.org/

New Mexico: https://braininjurynm.org/

Oklahoma: http://www.braininjuryoklahoma.org/

Texas: http://texasbia.org

Utah: http://biau.org

Washington: http://biawa.org/

Wisconsin: http://biaw.org/

Wyoming: http://www.wybia.org/

Additional Caregiver links:

http://www.brainline.org/landing_pages/categories/caregiving.html

http://www.wellspouse.org/

https://www.caregiver.org/

www.Aarp.org/caregiving

http://welcomehome.blogs.hopkinsmedicine.org/2016/02/18/3-ways-to-improve-your-family-caregiver-role-2/?utm_medium=cpcsocial&utm_source=Facebook&utm_campaign=Health&utm_term=3WaysImproveCaregiving&utm_content=WelcomeHomeBlog

 

 

Other partners in research and caregiving:

CurePSP_logo

 

 

 

 

Legal Representation

BIAA’s Preferred Attorney’s List:

https://www.biausa.org/professionals/preferred-attorneys