March 2021 News & Monthly Updates
HDSA Center of Excellence at Northwestern University
Northwestern Huntington's Disease Patient and Family Education Series
This year we are offering a quarterly online education series. We are in the process of planning events. Please join us for our first scheduled education session.

This Month: March 13th @ 9:30 am
Topic: HD and genetics
Speaker: Lisa Kinsley, Senior Genetic Counselor
General HD Support Group to follow after presentation
Register in advance for this meeting:
*Support group to follow

Upcoming sessions:
July 10th at 1PM
Topic: Managing Difficult Behaviors
Speaker: Dr. Gasuche

November - TBD
Topic: HD Research Panel Discussion
Speaker: Dr. Bega and research participants
Research Recruitment

PROOF-HD: NOW RECRUITING
Northwestern is excited to be participating in the PROOF-HD Study. This is a phase 3, randomized, placebo-controlled study evaluating the efficacy and safety of an oral drug called Pridopidine in patients with early stage Huntington's disease. The objective is to see if Pridopidine can slow down functional decline in Huntington's disease when compared to a placebo pill. If you are interested in learning more about the study and how to get involved, please reach out to study coordinator ZsaZsa Brown at 312-503-4121.

Kinect - HD: STILL RECRUITING, MORE PEOPLE NEEDED
This is a study for a new treatment for chorea associated with Huntington's disease.  If you have chorea that is not currently being treated we need you. The study is of a medication called Valbenazine to treat chorea, and is being conducted by the Huntington Study Group and Neurocrine Biosciences. The study involves 9 visits and will last 18 weeks. There is the opportunity to stay on the drug after the first part of the study is over. Participants will be randomly selected to receive the drug or placebo at first. We are very excited to participate as one of several sites around the country. If you or someone you know is interested in taking part in KINECT-HD, please contact our study coordinator ZsaZsa Brown at 312-503-4121 or email zsazsa.brown@northwestern.edu. ​

Kinect - HD 2 Study 
Northwestern Medicine will be participating in an open-label extension study of Kinect-HD.  The purpose of this study is to continue to gather safety and efficacy data on Valbenizine for the treatment of Huntington's chorea, while also providing study subjects who participated in Kinect-HD continued access to the study drug. In this open label study, all subjects are given Valbenazine, even if they received placebo during Kinect-HD. Kinect-HD 2 is open to research subjects who completed participation in Kinect-HD. For more information on Kinect-HD 2 contact Zsa Zsa Brown at 312-503-4121 or zsazsabrown@northwestern.edu

Telemedicine for Huntington's Clinical Care 
Individuals with Huntington's disease are invited to participate in the study "TeleHD" to determine the feasibility and value of telemedicine visits for HD patients and their care partners. This research study is conducted by Dr. Danielle Larson and Dr. Danny Bega.

Who is Eligible?
  • Have a diagnosis of Huntington’s Disease
  • Ages 18 to 70
  • Have a computer, laptop, tablet or phone with a camera, microphone, and internet access
  • Fluent in English
     
What will you be asked to do?
  • Complete two telemedicine visits (by camera at home) in addition to your two regular in-person Huntington’s Clinic visits over a 6-9 month time period.
  • During the visits, a neurologic exam will be performed and you will complete two cognitive tests. The telemedicine visits will likely take less than 30 minutes.
  • After each clinic visit, you will be asked to record the time and travel burden of your visit. 
  • After all of the visits, you will be asked to complete a survey about your satisfaction with telemedicine visits.

Please e-mail research study assistant Robert Modiest at robert.jr3@northwestern.edu​ or call 312-503-5645 to let him know your interest, or if you have any questions. 
Local Support Groups - Virtual

Northwestern Medicine HD Support Group:
We will be alternating between general support groups and topic drive discussions. Support groups are held the second Saturday of every month from 10am-11:30. **Please note - for the Saturday education events, support groups will be held after.
For meeting invite, please email Emily: emily.zivin@northwestern.edu

Scheduled Dates:
March 13th - After the Genetics and HD education session
April 10th: Conversation, Gene negative or non-HD in an HD family
May 8th: General Support Group
June 12th: Conversation, Gene positive
July 10th, 1PM
Education event and support group
Topic: Managing Difficult Behaviors
Speaker: Dr. Eric Gausche
General support group after presentation
August 14th: Conversation, Planning for the future
September 11th: General support group
October 9th: Conversation, Caregiving
November - TBD
Education event and support group
Topic: HD Research and Panel discussion
Speaker: Dr. Danny Bega, Leora Fox and research participants
General support group after presentation
December 11: Conversation, Thinking about testing

Bloomington/Geneva/Rockford:
March 28th from 2 - 3:30 pm. For more information please reach out to one of the follow support group leaders;
Bloomington: Larry Haigh, larryhaigh@gmail.com
Geneva: Joe Wiedemann, joseph.wiedemann@gmail.com
Rockford: Charlotte Rybarczyk, charlotte82963@gmail.com

Lake County:
March 8th, 7 - 8:30pm
contact: Barry or Marilyn Kahn
p. 847-975-2403

Rush University Medical Center:
4th Saturday of every month at 10am
Contact: Key'Aira Glasper, KeyAira_Glasper@rush.edu
HDSA Illinois Chapter: Monthly Virtual Education Series 2021

March: HD and Caregiving
Date: March 16th, 10 AM

Please join Ralph Cagna as he discusses her personal journey of caregiving for his HD family. 

Register in advance for this meeting:

April: Clinical Research and Updates
Date: April 19th, 7 PM

Please join Dr. Danny Bega from Northwestern Medicine as he provides an overview of HD research. 

Register in advance for this meeting:

May: Planning for Late-Stage HD and Adaptive Devices
Date: May 20th, 4 PM 

Please join Dr. Deborah Hall from Rush University Medical Center as she talks about planning for late stage HD and discusses adaptive devices that can help assist caring for your loved one.

Register in advance for this meeting:
HSA offers 8 free phone therapy sessions for HD individuals families
 
Need support? Don't forget that the HDSA offered 8 free phone therapy sessions for families affected by HD. The sessions are provided by AmWell Telehealth and therapists have been educated on HD.  
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HDSA online support groups

HDSA offers video based online support groups for gene negative in an HD family, HD positive (early symptoms), parent caregiver, caregivers and at-risk. To access groups, dates and time: https://www.supportgroupscentral.com/groups_detail.cfm?cid=27&CFID=2035993&CFTOKEN=bc20abb86aebf611-99E965AF-F1E3-120F-E2600DF5BCB3281F
HDSA Illinois chapter

Illinois support groups:
To learn more about locations, dates and times: https://illinois.hdsa.org/about/support-groups
ALL CHAPTER SUPPORT GROUPS ARE ONLINE. PLEASE EMAIL THE SUPPORT GROUP LEADER FOR MEETING INVITATION

Illinois HDSA Chapter: http://illinois.hdsa.org/

Illinois HDSA Chapter events: http://illinois.hdsa.org/events
National Youth Alliance

The NYA offers programing for individuals 12-29. In their upcoming miniseries, they will be talking about important topics and conversations during one hour-long sessions every other Saturday.

Upcoming dates for NYA miniseries:

3/6: Loss of a loved one
3/20: Testing Negative
4/10: Mental Health
4/17: Being/Living at Risk
5/1: Research 101
5/15: Sharing Your Story: Normalizing HD
5/29: JHD
6/26: Post Convention Blues
7/10: Different Coping Methods Between Siblings
7/24: To Test or Not to Test?
8/7: Managing HD and Advocating Through Schoo
l8/21: Managing Anniversaries: Grief of a loved one and testing
9/4: Testing Positive
9/18: Being a Young Caregiver: Dealing with Symptoms at Home
10/2: Anxiety and Depression

Covid-19 Vaccine
Numerous people are asking for advice regarding the covid-19 vaccine. Many of us in healthcare at Northwestern have already been vaccinated and are doing well. Many who are elderly, in nursing homes, or with certain high-risk conditions are being offered opportunities to get vaccinated first. Having an HD diagnosis should not stop you from opting in for the vaccine if you feel comfortable receiving it, and we encourage you to consider doing so and check with your doctor with specific concerns. Outside of those who are elderly, in nursing homes, etc, HD itself is not considered a high-risk condition as the immune system in HD seems to work well. While data on the vaccines is still early, we know the consequences of the virus itself can be very severe, and having HD should not stop you from opting in for the vaccine if you feel comfortable receiving it. If you have other conditions, then check with your doctor first. For more information related to the vaccine and HD please see: https://hdsa.org/blog/happy-holidays-from-the-hdsa-family/
Ken and Ruth Davee Department of Neurology and Clinical 
Neurological Sciences
Lavin Family Pavilion 
259 E. Erie Suite 1900
Chicago, IL 60611
Phone: (312) 695-7950
Fax: (312) 695-5747