UC Davis Huntington's Disease Center of Excellence

UC Davis Huntington's Disease Center of Excellence

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Help 4 HD HPE Virtual Event
August 15th 8:00 am
Focus on Caregiving. Please go to Help 4 HD website for more information.

https://www.help4hd.org/events-1/vi
rtual-hipe-caregiving
Dr. Vicki Wheelock: Today, April 30, marks 22 years as Founding Director of the UC Davis Huntington's Disease Clinic! Thank you for 22 years of Excellence in Caring, Visions for the Future, and Training the next generation of neurologists! We're eternally grateful to you!
GRATEFUL TO HAVE SOLD 14 TEES OUT OF REQUIRED 50 TO PRINT WITH ONLY 18 DAYS LEFT - PLEASE SHARE to help raise funds for Huntington's Disease & Juvenile HD with money going to National Youth Alliance!! This design is NOT for everyone SO it is for those that are NOT easily offended. The more I sell the more NYA will get .These $20 shirts represent my HD Warrior attitude about my own HD. I lost my dad to HD at 48 in 2007. He left me along with my sister and brother with HD as well. Just trying to do my part while I can. KISS MY ASS HD/JHD!! . If you buy one you WILL have these in time for HDSA Convention in June in LA. Adults Sizes thru 4XL and Kids Sizes thru 14/16. Makes a great gift especially if you go to an HD Walk, Gala, Bowl a thon, Golf Tournament, Convention, Symposium, Support Group, or Dr Appt or just because you want o be awesome like me. Lol.

Eternally Grateful
Desirae Martin Collett

Your website link to the medications pdf is down. It does not open. It is such a great resource! We're having issues with expensive medications and would like to find alternatives. Hope you can fix it asap!
Hello patients, families, friends, and community members. My name is Kathryn Casey and I am a nurse practitioner new to the HDSA Center of Excellence at UC Davis Health. I am enjoying meeting with patients and families, and working with this great multi-disciplinary team! Please click the link read my bio. Thank you!

Rare Patient Voice


Huntington's Community

There are multiple active study opportunities RPV is working on. If you or someone you know is interested, please tag them below.

There is a $50 referral bonus available for all successful referrals.

All those interested, please signup with us below:

My sister Jen passed just recently after a courageous battle with Huntington's Disease. I was so blessed to have her in my life. She was fierce, strong loving and someone to look up to .

This year we are walking in her memory and will continue to fight so she can finally rest. Jen was a fierce warrior who spoke to many groups about this disease including pre-med students and support groups. She served as a Director of the Greater Los Angeles Chapter of the Huntington’s Disease Society of America. She even found time to help develop the Peer Facilitator Training Program for HD support groups and develop the STAR Retreat for young at risk people.

Thanks everyone and sorry to hit you up. If anything, her passing has made me strive to do even more for this cause.

Also want to thank UC Davis for all they did for her. Our family is so grateful.

OUR MISSION:
■To provide excellent, comprehensive and compassionate care and outreach to families
■To provide expert education to families, research

Operating as usual

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting. 07/22/2021

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting.

TONIGHT 7/22 @ 5:30 PST, Education Event is NAVIGATING CARE OPTIONS

Christine Grmolyes, GCM & Family Consultant, Senior Care Solutions will be presenting and discussing the various long term care options so you can make decisions about how best to support for your HD loved one. Areas of discussion will be housing/facility options, in-home care costs and considerations, Medi-Cal and Medi-Care, Veteran's Benefits and Long-Term Care Insurance and MORE. Many of these resources are NOT HD specific, therefore if you are also caring for other disabled or aging persons this may provide information for them too!

This session is FREE and open to all persons.

When: Jul 22, 2021 05:30 PM Pacific Time (US and Canada)

Register in advance for this meeting:
https://ucdavishealth.zoom.us/meeting/register/tJEudeCgqTgjE9NfZspz-ROyWJtuBehCBd3P

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting.
Topic: Navigating Care Options, Christine Grmolyes, Genetic Care Coordinator, Senior Care Solutions Open to any and all persons interested.
ucdavishealth.zoom.us

After registering, you will receive a confirmation email containing information about joining the meeting.

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting. Topic: Navigating Care Options, Christine Grmolyes, Genetic Care Coordinator, Senior Care Solutions Open to any and all persons interested.

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting. 06/23/2021

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting.

Please JOIN us for a FREE Huntington's Disease Legal Assistance Presentation and Q&A TONIGHT, June 23rd @ 6:30. We will have a presentation from Jeff Dulgar– Licensed Attorney. Jeff is from HD family and is offering his knowledge and services, pro bono to the HD community. He works and resides in SF, is employed @ a non-profit legal aid center in SF. Jeff recognizes that there is legal assistance needed in our community for issues such as disability, advance care directive, estate planning, conservatorship, among many other things. Jeff will share some general information and legal assistance about these various topics, and we will have time for specific questions. Upon registering for the event, you can ask your question beforehand or ask on the live event. Please join us for a very informative night discussing legal issues and assistance in HD.

Please share with family and friends that may benefit from this presentation.

This event will be Live streamed to FB, however FB questions will not be monitored in real time, therefore if you have questions, please RSVP using the zoom link.

Register in advance for this meeting:
https://ucdavishealth.zoom.us/meeting/register/tJYtdeuvqD4vGNIihWUdix_Tr2Ywb_XRAIK0

I look forward to seeing you all VIRTUALLY tomorrow evening. Lisa

Welcome! You are invited to join a meeting: UC Davis HDSA Center of Excellence Family Education Series. After registering, you will receive a confirmation email about joining the meeting. Topic: Legal Assistance & Planning -- Jeff Duglar, Attorney Open to any and all persons interested.

06/16/2021

Help 4 HD International is proud to announce and welcome Dr. Peg Nopoulos as one of our guest speakers at this years 9th Annual Symposium. For more info or to register visit www.help4hd.org

pridopidines-neuroprotective-properties-in-huntingtons-disease 05/27/2021

pridopidines-neuroprotective-properties-in-huntingtons-disease

https://www.prilenia.com/pridopidines-neuroprotective-properties-in-huntingtons-disease

Prilenia Therapeutic's most recent press release regarding their PROOF-HD clinical trial.

pridopidines-neuroprotective-properties-in-huntingtons-disease Newly published papers further elucidate the mechanisms underlying pridopidine’s neuroprotective properties through activation of the Sigma-1 Receptor (S1R). 

05/08/2021

Family Education Day

Join us NOW (10am PST) for our HD Family Education Day!!!! With Dr. WHeelock, Dr. Duffy, Becky Craig & Max Moon.

05/07/2021

Please join us for the 2021 VIRTUAL Family Education Day
Saturday, May 8, 2021

10:00am – 12:00pm
Registration is required (see below)
10:00am – 10:10am: Welcome
• Dawn Green, President, HDSA Northern California Chapter
10:10am – 11:30am: Research update:
• Vicki Wheelock, MD, Director of HDSA Center of Excellence @ UC Davis Health
• Sasha Duffy, MD, Movement Disorder Neurologist at UC Davis Health
• Becky Craig, MSHS, Research Coordinator at UC Davis Health
11:30am – 11:45am: Advocacy:
• Max Moon, Board Member, HDSA Northern California Chapter
11:45am – 11:55am: About HOPES:
• Lauren Hinkley, Board Member, HDSA Northern California Chapter
11:55am – 12:00pm: Closing
Questions?
Contact: Lisa Mooney ~ [email protected] ~ 916-734-6277
https://hdsa-org.zoom.us/meeting/register/tJ0vc-6hrTwqHdLadtmrsvlsuKeBys7gaJyj

Welcome! You are invited to join a meeting: Family Education Day. After registering, you will receive a confirmation email about joining the meeting. 05/07/2021

Welcome! You are invited to join a meeting: Family Education Day. After registering, you will receive a confirmation email about joining the meeting.

Join us for a FREE Education TOMORROW!!!!

Welcome! You are invited to join a meeting: Family Education Day. After registering, you will receive a confirmation email about joining the meeting. This education day will offer information and education about HD research, advocacy, as well as a Research Discussion Panel to address any concerns, questions and feelings about HD research.

05/01/2021

Help 4 HD HIPE May 2021

Join us for a FREE event about the Lifespan of HD and getting support each step of the way!

Andrew Feigin and Ralf Reilmann, AD/PD 2021: The PROOF-HD Study - touchNEUROLOGY 04/09/2021

Andrew Feigin and Ralf Reilmann, AD/PD 2021: The PROOF-HD Study - touchNEUROLOGY

Dr. Andy Feigin and Dr. Ralf Reilmann give an update on more things going on in the world of HD Research - PROOF-HD

Andrew Feigin and Ralf Reilmann, AD/PD 2021: The PROOF-HD Study - touchNEUROLOGY touchNEUROLOGY had the pleasure of meeting with Andrew Feigin (Department of Neurology, NYU Grossman School of Medicine, New York City, NY, USA) and Ralf Reilmann (Founding Director, George Huntington Institute, Münster, Germany), to discuss the clinical utility of pridopidine in Huntington’s dis...

A Research Study of Experimental Valbenazine for the Treatment of Chorea Associated With Huntington Disease 03/29/2021

A Research Study of Experimental Valbenazine for the Treatment of Chorea Associated With Huntington Disease

A Research Study of Experimental Valbenazine for the Treatment of Chorea Associated With Huntington Disease Volunteer for research at UC Davis and contribute to discoveries that may improve health care for you, your family, and your community!

03/24/2021

Looking for more answers or do you have questions about the end to the Generation HD1 study? Please join HDSA's Jennifer Simpson & Dr. Yohrling and our own Dr. Wheelock to discuss what we know and where we go from here! FREE to join. 8am PST, 11am EST -- Please register to get the webinar link. Hugs, Lisa Mooney, LCSW

GENERATION-HD1 RESEARCH WEBINAR
THURSDAY, MARCH 25TH | 11AM (ET)
REGISTER: https://hdsa-org.zoom.us/webinar/register/WN_eTXCp8LYRkujXkuWA8i4og
Please join us for a discussion of the recent disappointing news that the Roche/Genentech Generation-HD1 trial has stopped dosing its drug (tominersen). Jennifer Simpson, LCSW (Assistant Director of Youth and Community Services at HDSA), George Yohrling, PhD (Chief Scientific and Mission Officer at HDSA) and Vicki Wheelock, MD (HDSA Center of Excellence Director at UC-Davis and Site Investigator for the Generation-HD1 trial) will participate in the discussion and take questions from audience.

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily

Sad News from Roche and Ionis - A*O Trial Halted Early 03/24/2021

Sad News from Roche and Ionis - A*O Trial Halted Early

This is yet another disappointing outcome for the HD community. Still lots of unanswered questions which we will get in the weeks/months to come. While we all fiercely hoped for a successful outcome we will not let this stop us (scientists, HD professionals and HD families) from moving forward with courage and HOPE to someday getting the "Good News" announcement. Sending hugs to all during this time, we will NOT give up. If you are struggling with this news, please reach out to your HD community for support, we are all in this together, support is available!

Sad News from Roche and Ionis - A*O Trial Halted Early Disappointing news from Roche and Ionis; the phase III Tominersen huntingtin-lowering trial has been halted early

03/17/2021

Have you heard about the KINECT-HD study?

KINECT-HD is a research study of valbenazine as
an investigational treatment for Huntington disease chorea conducted by the HSG. The
Huntington Study Group is actively enrolling participants for KINECT-HD in Canada and the
United States. To learn more about KINECT-HD, visit www.KINECT-HD.org

Have you heard about the KINECT-HD study?

KINECT-HD is a research study of valbenazine as
an investigational treatment for Huntington disease chorea conducted by the HSG. The
Huntington Study Group is actively enrolling participants for KINECT-HD in Canada and the
United States. To learn more about KINECT-HD, visit www.KINECT-HD.org

02/10/2021

KINECT-HD is still seeking participants for the research study of valbenazine for Huntington
disease chorea. The study will include approximately 46 total sites in the United States and
Canada. For a current list of active Huntington Study Group site locations and to learn more
information about the study, go to www.KINECT-HD.org

KINECT-HD is still seeking participants for the research study of valbenazine for Huntington
disease chorea. The study will include approximately 46 total sites in the United States and
Canada. For a current list of active Huntington Study Group site locations and to learn more
information about the study, go to www.KINECT-HD.org

01/20/2021

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

01/20/2021

The Journal of Huntington's Disease has recently published a review of findings out if the University of Iowa on the Neurodevelopmental Hypothesis of HD. A full press release with an overview of their findings can be found at bit.ly/JHD9-3_PR1
These findings come from the Kids-HD Study, which recently evolved into the ChANGE HD Study and expanded to 5 sites nationwide, including one at UC Davis! For more information about how you can participate, contact Talia Hamm at [email protected]

The Journal of Huntington's Disease has recently published a review of findings out if the University of Iowa on the Neurodevelopmental Hypothesis of HD. A full press release with an overview of their findings can be found at bit.ly/JHD9-3_PR1
These findings come from the Kids-HD Study, which recently evolved into the ChANGE HD Study and expanded to 5 sites nationwide, including one at UC Davis! For more information about how you can participate, contact Talia Hamm at [email protected]

COVID Symposium 01/14/2021

COVID Symposium

Looking for more COVID test and vaccine information.

COVID Symposium You probably do not miss the swab test, do you? But, have you ever wondered(1) How can sample collections be so simple? (2) What happens with your saliva aft...

01/07/2021

The Journal of Huntington's Disease has recently published a review of findings out if the University of Iowa on the Neurodevelopmental Hypothesis of HD. A full press release with an overview of their findings can be found at bit.ly/JHD9-3_PR1

These findings come from the Kids-HD Study, which recently evolved into the ChANGE HD Study and expanded to 5 sites nationwide, including one at UC Davis! For more information about how you can participate, contact Talia Hamm at [email protected]

The Journal of Huntington's Disease has recently published a review of findings out if the University of Iowa on the Neurodevelopmental Hypothesis of HD. A full press release with an overview of their findings can be found at bit.ly/JHD9-3_PR1

These findings come from the Kids-HD Study, which recently evolved into the ChANGE HD Study and expanded to 5 sites nationwide, including one at UC Davis! For more information about how you can participate, contact Talia Hamm at [email protected]

12/23/2020

Happy Holidays to our HD community and beloved HD families! This year has been challenging in many ways both collectively as a community and as individuals, we miss seeing you all in person, but hope you are all doing well -- whatever that looks like for you and your family! On behalf of the HDSA Center of Excellence at UC Davis HD team we want to wish you all a Happy, Healthy and Safe Holiday season. May this post bring you a smile . Cheers, as we all ZOOM (😉) into 2021!

Thank you to Meriah Horton @ UC Davis Dept of Neurology for her creativity and holiday neurons.

12/04/2020

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

12/01/2020

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

11/23/2020

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

supportgroupscentral.com 10/28/2020

Group Profile: Huntington's Disease Society of America | Support Groups Central

Attention all HD individuals, partners, couples...National HDSA has a VIDEO support group just for YOU called:

Family Planning VIDEO Support Group.

This group is facilitated by a Social Worker (Lisa Mooney) and Genetic Counselor (Mara Sifry) knowledgeable in HD. We want to give persons an opportunity to speak with each other about challenges, struggles, feelings, triumphs around HD family planning. All perspectives welcome. We will ask each other questions, get answers, support each other in the tough decisions you all make when living in an HD family.

Topics will cover, but NOT limited to: genetic testing process pros/cons, reproductive options, things to do when preparing to start a family, coping with all the feelings and opinions of others, how to discuss with loved ones/partners, finding medical providers, etc.
To register please visit www.supportgroupscentral.com/hdsa and select the Nov 19th group. This is OPEN to any person and wanting to connect with other HD families. Please forward to any families/family members that may benefit.

supportgroupscentral.com on

supportgroupscentral.com 10/01/2020

Group Profile: Huntington's Disease Society of America | Support Groups Central

Are you Beginning your HD Journey? Then we have a support group for you! This group is open to families members in the United States.

First meeting, THURSDAY, OCTOBER 29th @ 7pm EST; 4pm PST.

Please join to get answers questioned and connect with other families with shared experiences.

To register visit: www.supportgroupscentral.com/hdsa

supportgroupscentral.com on

09/08/2020

Change-HD

Children, adolescents and young adults who are at-risk for Huntington’s Disease are invited to participate in a brain imaging study at the UC Davis Medical Center. Participants are eligible if they are 6-30 years old and have a parent or grandparent who has been diagnosed with Huntington’s Disease. For more information contact study staff at 916-891-1233 or email [email protected]!

surveymonkey.com 09/03/2020

Northern California HD Families and Community

We want your feedback on HD Virtual Education! Only takes 3 minutes, thank you in advance for your time and feedback.

https://www.surveymonkey.com/r/NorcalEducation

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Videos (show all)

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Kyle Fink of the Nolta Stem Cell Lab also gave us this short video clip to illustrate how TALEs introduced to a cell rec...

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UC Davis Midtown Ambulatory Care Center, 3160 Folsom Blvd., Suite 2100
Sacramento, CA
95816

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