Announcements & News
Stay up-to-date on important announcements and news! The most recent announcements and news are located on top. Please click on the toggle of each item to reveal more information.
Announcements
Learn more about our newest team member!
Please click on the title of this announcement for more information.
Dr. Pedro Gonzalez-Alegre, the founder and Director of the Huntington’s Disease Center of Excellence (HD COE) at The University of Pennsylvania for the last 7 years will be transitioning to a new career path outside of Penn Medicine. Dr. Gonzalez-Alegre has served our HD patients and their families with a commitment to delivering exceptional care, his presence will surely be missed by all.
We are lucky that we have a new Director, Dr. Aaron Lasker, joining our team immediately who will serve as the new Medical Director of the HD COE immediately so that we have a smooth transition for our patients.
Learn more about the 2nd International Young Person Virtual Congress!
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The Huntington's Disease Youth Organization (HDYO) held its 2nd International Young Person Virtual Congress on March 5-6, 2022! Young people impacted by HD attend educational sessions to learn the latest in HD research and how they can get involved in the HD community.
***The FDA gave the Pfizer-BioNTech COVID-19 vaccine authorization to use in children ages 5 and older.*** The F.D.A. broadened Pfizer’s authorization to cover the younger age group (age 5-15 years old) on an emergency basis. The Moderna and Johnson & Johnson vaccines remain authorized only for adults.
Since December 9, 2021, Federal regulators authorized booster shots of the Pfizer-BioNTech coronavirus vaccine for another swath of the population, 16- and 17-year-olds, at least six months after they received their second shot of that vaccine. Everyone 18 and older has been eligible since Nov. 19, 2021 to receive a booster, six months after getting a second shot of the Pfizer or Moderna vaccine, or two months after a Johnson & Johnson shot.
In a nutshell: If you are offered a vaccine by your health care provider, we recommend that you receive the vaccine as offered unless there is a reason you should avoid that vaccine, such as an allergy to an ingredient (click here for more information). Inform your vaccination provider about all your allergies and health conditions.
Please click on the title of this announcement for more information.
Vaccine Information
If you would like to schedule a COVID vaccine appointment at Penn Medicine, please call the vaccine scheduling hotline at 267-758-4902. They answer calls between 8:00 am - 5:00 pm on Monday through Friday. The vaccines are NOT being administered at Penn's HD Center, but they are available at other Penn Medicine locations. View locations and hours information on the Penn Medicine vaccine website.
If you would like us to keep you informed about COVID vaccine efforts at Penn Medicine, please complete the Penn Medicine Vaccine Interest Form (this form will NOT sign you up for a vaccine appointment, but it will keep you informed on the latest vaccine news).
*For more information about vaccines and HD, please click here to view an article by HDBuzz.*
*For general vaccine questions, please click here.*
How to find other vaccine providers near you:
- Visit Vaccines.gov to find vaccination providers near you. In some states, information may be limited while more U.S. vaccination providers and pharmacies are being added. Learn more about COVID-19 Vaccination Locations on Vaccines.gov.
- Text your ZIP code to 438829 or call 1-800-232-0233 to find vaccine locations near you in the U.S.
- Check your local pharmacy’s website to see if vaccination appointments are available. Find out which pharmacies are participating in the Federal Retail Pharmacy Program.
- Contact your state health department to find additional vaccination locations in the area.
- Check your local news outlets. They may have information on how to get a vaccination appointment.
More information by state:
Vaccine Safety
To date, there is no indication that these vaccines pose any added risk to patients with Huntington's disease or related disorders compared to the general population. There is also no interaction between the vaccine and Huntington's disease medications.
If you are offered a vaccine by your health care provider, we recommend that you receive the vaccine as offered unless there is a reason you should avoid that vaccine, such as an allergy to an ingredient (click here for more information). Inform your vaccination provider about all your allergies and health conditions.
As we learned on March 22nd via a press release and community statement from Roche, their Phase 3 study of tominersen, known as the GENERATION-HD1 trial, has been halted early, meaning that participants will no longer receive the study drug or placebo.
Please click on the title of this announcement to view more information and watch recorded webinars by HDSA about the recent trial updates.
As we learned on March 22nd via a press release and community statement from Roche, their Phase 3 study of tominersen, known as the GENERATION-HD1 trial, has been halted early, meaning that participants will no longer receive the study drug or placebo. The decision to halt dosing of this genetic therapy came as a shock to the community, from participants and their loved ones, to doctors, researchers, and medical professionals. It was based on the advice of an independent data monitoring committee (iDMC), which exists for every large clinical trial. This is a group that analyzes the data regularly to monitor safety and efficacy, without having a personal or economic interest in the outcome of the trial. If you are interested in a bit of a deeper dive into the language in the press release, HDBuzz released an article about the news, which is available here.
Within the coming months, as Roche gains the opportunity to analyze the data, we hope to be able to share more information with the community as to the facts behind this decision. It is difficult to overstate the hope that many people had placed in this trial, and many reactions and emotions have arisen. Although we have little information at the moment, a variety of community organizations, including HDSA, are offering Q&A sessions and webinars to discuss the news and to provide as much clarity as possible given the information available.
Whatever you’re experiencing, you’re not alone, and we all look forward to learning more in the days and weeks ahead.
News
Missed the 36th Annual Huntington's Disease Society of America (HDSA) Convention on June 10-13? Click here to view recordings from past conventions and this year's convention as they become available! All recorded sessions from the Virtual 36th Annual HDSA Convention will be available by early July. Listen to conversations with clinicians, community members, and researchers on all things HD. Research talks included showcases of ongoing clinical trials, HD therapies in the pipeline, and updates on findings from recent clinical trials.
Click Here for Convention Recordings
Please click on the title of this news to reveal the 2022 HDSA Convention location!
Mark your calendars! The 37th Annual HDSA Convention will be held in Atlanta, GA, on June 9-11, 2022, at the Marriott Marquis.
The HDSA Center of Excellence at Pennsylvania Hospital is open and seeing both new and returning patients!
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For safety, Penn Medicine and the HD clinic have instituted measures to help keep our patients safe in our clinic setting, including new check-in processes to assure social distancing, greatly reduced numbers of patients on in-person clinic days, and cleaning exam rooms between each patient. We are here for you, and ready to provide your care.
For more information or for an appointment, contact Jennifer Klapper, RN, Clinic Coordinator, at phone 215-829-5176.
Our medical students' experiences with the HD Center were featured in the Philadelphia Inquirer!
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Many of you had the opportunity to meet one of our two Penn medical students, Kavitha Muralidharan or Ian Sigal, on the phone and during your telemedicine clinic visits. We were pleased to mentor them "virtually," with Dr. Gonzalez guiding them through an intensive HD focus when their planned in-person clinical experiences were put on hold during the COVID pandemic. Their presence became a truly special aspect of the HD Center's telemedicine experience with you. They've written about how deeply this experience has affected them. Our thanks to you for your openness in allowing them in, and to learn from you about what it's like to live with HD. Click here to read their article about their time with you, published in the Philadelphia Inquirer!