Hereditary Neurological Disease Centre

"𝗠𝗜𝗡𝗜 𝗕𝗥𝗔𝗜𝗡𝗦 𝗚𝗥𝗢𝗪𝗡 𝗜𝗡 𝗔 𝗗𝗜𝗦𝗛 𝗦𝗛𝗘𝗗 𝗟𝗜𝗚𝗛𝗧 𝗢𝗡 𝗛𝗨𝗡𝗧𝗜𝗡𝗚𝗧𝗢𝗡’𝗦 𝗗𝗜𝗦𝗘𝗔𝗦𝗘 𝗔𝗡𝗗 𝗛𝗢𝗪 𝗪𝗘 𝗠𝗜𝗚𝗛𝗧 𝗧𝗥𝗘𝗔𝗧 𝗜𝗧
Exciting new findings using 3D human lab-grown mini brains inform ongoing HTT-lowering trials and suggest that stem cell transplants for HD may improve cell-to-cell communication and reduce disease features."
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Read full article for more on the power of stem cells in new HD research.

Mini brains grown in a dish shed light on Huntington’s disease and how we might treat it Exciting new findings using 3D human lab-grown mini brains inform ongoing HTT-lowering trials and suggest that stem cell transplants for HD may improve cell-to-cell communication and reduce disease features.

Jason Ritter played with Natasha Leggero on 8/22 and together they won $32,000 to split between their chosen organizations. Jason Ritter chose to play for Huntington's Disease Society of America and they will now receive $16,000!
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If you missed it and want to watch, you can stream the episode on Hulu now!

We loved seeing Jason Ritter play ! ICYM last night's episode stream on Hulu now!

𝗦𝗛𝗢𝗣𝗣𝗜𝗡𝗚 𝗧𝗥𝗜𝗣 𝗙𝗢𝗥 𝗔 𝗚𝗢𝗢𝗗 𝗖𝗔𝗨𝗦𝗘? 𝗬𝗘𝗦 𝗣𝗟𝗘𝗔𝗦𝗘!

Our local Kendra Scott store hosted us last year for a "Give Back" night and we had a fabulous turnout. We hope to do that again this year and are inviting you all to join us!
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2 WAYS TO SUPPORT US

IN-PERSON: *Friday, September 20th from 4pm-6pm at the Wichita Kendra Scott store (1423 N Webb Rd, Ste 117 -- Wichita, KS 67206)

ONLINE: www.kendrascott.com -- checkout using promo code GIVEBACK-GYFET (code only valid for 9/20 and 9/21)

*If you can't attend our event during the specified date/time, you can mention HNDC anytime you shop on 9/20 and 9/21 and we'll benefit from your sale

Tune in this Wednesday (8/21) to at 8/7c, on ABC or Hulu, as Actor Jason Ritter competes to support Huntington's Disease Society of America in the fight against HD!

Jason Ritter and Natasha Leggero on ? Yes, please! 👏 Watch them try to win big Wednesday at 8/7c on ABC and stream on Hulu!

"𝗠𝗢𝗥𝗘 𝗣𝗛𝗬𝗦𝗜𝗖𝗔𝗟 𝗔𝗖𝗧𝗜𝗩𝗜𝗧𝗬, 𝗟𝗘𝗦𝗦 𝗧𝗩 𝗧𝗜𝗠𝗘 𝗠𝗔𝗬 𝗗𝗘𝗟𝗔𝗬 𝗛𝗨𝗡𝗧𝗜𝗡𝗚𝗧𝗢𝗡’𝗦 𝗔𝗚𝗘 𝗢𝗙 𝗢𝗡𝗦𝗘𝗧
Minimizing sedentary behavior linked with health benefits in context of disease"
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Read the full article for more on findings of how being physically active is significantly associated with a delayed age of the onset of Huntington’s disease and spending more time watching television is significantly linked to an earlier age of onset.

Huntington’s disease age of onset may be delayed by more physical... Researchers suggest people carrying a Huntington's-causing mutation reduce sedentary behavior to delay the occurrence of motor symptoms.

"𝗛𝗘𝗔𝗟𝗧𝗛𝗬 𝗛𝗔𝗕𝗜𝗧𝗦 𝗕𝗘𝗙𝗢𝗥𝗘 𝗦𝗬𝗠𝗣𝗧𝗢𝗠𝗦 𝗦𝗛𝗢𝗪 𝗠𝗔𝗬 𝗦𝗟𝗢𝗪 𝗗𝗜𝗦𝗘𝗔𝗦𝗘 𝗣𝗥𝗢𝗚𝗥𝗘𝗦𝗦𝗜𝗢𝗡
Sociodemographic factors, behavior could factor in how Huntington's develops"
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Read the full article for a study on how a high level of education, low to moderate alcohol intake, not smoking, and controlling one’s weight may slow Huntington’s disease progression among those who’ve yet to have symptoms.

Higher education, healthy habits before symptoms may slow disease... Education levels, alcohol intake, not smoking, and a good weight before symptoms manifest may affect Huntington's disease progression.

Read the full article for more as they explore the link between an increase in GFAP levels in cerebrospinal fluid and Huntington's disease progression 🧠👩‍🔬🧬

Levels of GFAP in cerebrospinal fluid (CSF) may be a marker of Huntington’s disease progression, a study found. https://buff.ly/3WpB3jN

myHDstory is accepting enrollment for the online research study, LEAD-HD. This 24-month longitudinal study will ask participants to report what they feel and experience about .

The data collected will help…
- Create a patient-reported natural history of HD.
- Clinically meaningful outcomes for clinical trials.
- A resource to enable respondents to participate in future research.
- A shared database for researchers to access, analyze de-identified data, and publish findings.

Get started at myHDstory.org or download the mobile app.

⛱ 𝗛𝗡𝗗𝗖 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗖𝗟𝗢𝗦𝗘𝗗 𝗼𝗻 𝗙𝗿𝗶𝗱𝗮𝘆, 𝗝𝘂𝗹𝘆 𝟮𝟲𝘁𝗵 🌞

If you need assistance during this time, please call (316) 609-3020 to speak with our live answering service.

Stay cool and enjoy the last days of summer break! 🙌

Blue skies for Skyhawk: Positive news from Phase 1 trial for SKY-0515 There’s more good news in the forecast in the Huntington’s disease therapeutic space as we receive positive results from Skyhawk Therapeutics about their small molecule SKY-0515 that lowers huntingtin and targets somatic expansion.

Buckle in: Gene therapy AMT-130 appears to slow down signs of Huntington’s disease in Phase I/II clinical trial More good news for the HD community from uniQure, whose one-and-done gene therapy appears safe and shows hints of slowing down signs and symptoms of the disease

🩵 𝗢𝗨𝗥 𝗛𝗡𝗗𝗖 𝗧𝗘𝗔𝗠 𝗪𝗘𝗟𝗖𝗢𝗠𝗘𝗦 𝗔 𝗡𝗘𝗪 𝗠𝗘𝗠𝗕𝗘𝗥 🩵

We are thrilled to share that our social worker, Birdie Robertson, has recently welcomed her third child into the world. Andrew James Robertson was born on schedule, on Saturday, June 22nd.

We extend our warmest wishes to Birdie and her family as they embrace the happiness and joy of their growing family.

--𝗢𝗙𝗙𝗜𝗖𝗘 𝗖𝗟𝗢𝗦𝗘𝗗 𝟳/𝟰 𝗔𝗡𝗗 𝟳/𝟱 𝗙𝗢𝗥 𝗧𝗛𝗘 𝗛𝗢𝗟𝗜𝗗𝗔𝗬--

HNDC offices will be closed on Thursday, July 4th and Friday, July 5th in observance of Independence Day. We will return to normal operating hours on Monday, July 8th.

If you are in need of urgent assistance during this time, please call the office at (316) 609-3020 to be connected with our Live Answering Service. Have a safe weekend! 🇺🇸

Wichita trio shares details from time filming Food Network’s ‘Great Food Truck Race’ The show, which has aired on Food Network since 2010, starts its 17th season on Sunday, June 30, and three Wichitans will be among the stars.

Sarah Morris reflects on the all-encompassing nature of Huntington’s — especially how it’s “in your head all the time.” https://buff.ly/44EBg6x

Positive news from Wave Life Sciences SELECT-HD trial The outcomes of the SELECT-HD clinical trial are out, with encouraging news for this allele-selective huntingtin lowering therapy

Wave Life Sciences announces SELECT-HD results. For more information please see the community letter:https://hdsa.org/wp-content/uploads/2024/06/Wave-HD-Community-Letter-6.25.24.pdf

𝗡𝗢 𝗣𝗜𝗩𝗢𝗧 𝗡𝗘𝗘𝗗𝗘𝗗 𝗙𝗢𝗥 𝗣𝗧𝗖-𝟱𝟭𝟴

"PTC Therapeutics shared 12 month data from the PIVOT-HD trial, testing the oral HTT lowering drug PTC-518. While designed to assess safety, they shared encouraging results that the drug showed promising signs for biomarkers and some clinical metrics."

Click to read full article for more.

No pivot needed for PTC-518 PTC Therapeutics shared 12 month data from the PIVOT-HD trial, testing the oral HTT lowering drug PTC-518. While designed to assess safety, they shared encouraging results that the drug showed promising signs for biomarkers and some clinical metrics.

--𝗖𝗛𝗢𝗢𝗦𝗜𝗡𝗚 𝗡𝗢𝗧 𝗧𝗢 𝗛𝗔𝗩𝗘 𝗖𝗛𝗜𝗟𝗗𝗥𝗘𝗡 𝗜𝗦 𝗔 𝗗𝗘𝗖𝗜𝗦𝗜𝗢𝗡 𝗧𝗛𝗔𝗧 𝗖𝗢𝗠𝗠𝗔𝗡𝗗𝗦 𝗥𝗘𝗦𝗣𝗘𝗖𝗧--

Read on for one man's story on why he's proud of his daughter for forging her own path in life.

Choosing not to have children is a decision that commands respect Columnist Carlos Briceño is proud of his daughter, who is gene-positive for Huntington's, for choosing not to have children.

🚨𝗪𝗘'𝗥𝗘 𝗖𝗟𝗢𝗦𝗘𝗗 𝗧𝗢𝗗𝗔𝗬-𝗙𝗿𝗶𝗱𝗮𝘆, 𝗝𝘂𝗻𝗲 𝟮𝟭𝘀𝘁🚨

If you need immediate assistance, please call (316) 609-3020 to speak with our live answering service.

Have a great weekend and stay cool! 🌞⛱ We'll see you back on Monday, June 24th. 📆

𝗛𝗔𝗣𝗣𝗬 𝗝𝗨𝗡𝗘𝗧𝗘𝗘𝗡𝗧𝗛!

Today we commemorate the emancipation of enslaved people in the US. It's a day to reflect on our past and also a day of hope for where we go from here.

"We may have all come on different ships, but we're in the same boat now." - Martin Luther King Jr

For a deeper dive on the history of Juneteenth, click to read "What is Juneteenth?" from the Smithsonian National Museum of African American History and Culture.

nmaahc.si.edu

--𝗧𝗛𝗘 𝗗𝗔𝗡𝗚𝗘𝗥𝗦 𝗢𝗙 𝗕𝗘𝗜𝗡𝗚 𝗧𝗢𝗢 𝗢𝗣𝗧𝗜𝗠𝗜𝗦𝗧𝗜𝗖 𝗔𝗦 𝗔 𝗛𝗨𝗡𝗧𝗜𝗡𝗚𝗧𝗢𝗡’𝗦 𝗖𝗔𝗥𝗘𝗚𝗜𝗩𝗘𝗥--

Click to read the full article for more on how prioritizing positivity at all costs can be more harmful than helpful.

The challenges of growing up in a Huntington's disease family Having Huntington's disease in the family can be especially hard to navigate for children and young adults, columnist Becky Field says.

𝐇𝐃𝐒𝐀 𝟐𝟎𝟐𝟒: 𝐓𝐚𝐥𝐤 𝐭𝐡𝐞𝐫𝐚𝐩𝐲 𝐜𝐚𝐧 𝐡𝐞𝐥𝐩 𝐭𝐨 𝐧𝐚𝐯𝐢𝐠𝐚𝐭𝐞 𝐥𝐢𝐟𝐞 𝐰𝐢𝐭𝐡 𝐇𝐮𝐧𝐭𝐢𝐧𝐠𝐭𝐨𝐧’𝐬
With right therapist, it's way to 'investigate and address' daily challenges

"Psychotherapy — talk therapy with a professional to help a person manage their emotional state and mental health — can be of benefit to people with Huntington’s disease, though finding the right therapist can require some “shopping around.” That’s according to Spencer Diehl, a licensed clinical social worker/therapist at Vanderbilt University Medical Center who’s spent the last few years working with Huntington’s patients. Diehl discussed the ins and outs of psychotherapy in Huntington’s during an oral presentation at last week’s Huntington’s Disease Society of America (HDSA) annual convention. The presentation was titled “Therapy 101: Understanding Therapy and Finding the Right Fit.”

Click to read full article for more.

HDSA 2024: Psychotherapy can help navigate life with Huntington's Talk therapy aims to confront the many challenges of living with Huntington's, but finding the right therapist can be key, an expert advises.

𝐅𝐑𝐎𝐌 𝐁𝐈𝐎𝐓𝐄𝐂𝐇𝐍𝐎𝐋𝐎𝐆𝐘 𝐓𝐎 𝐃𝐎𝐆 𝐆𝐑𝐎𝐎𝐌𝐈𝐍𝐆 𝐑𝐄𝐀𝐋𝐈𝐓𝐘 𝐒𝐇𝐎𝐖 𝐖𝐈𝐍𝐍𝐄𝐑, 𝐖𝐀𝐓𝐂𝐇 𝐂𝐎𝐑𝐈𝐍𝐀'𝐒 𝐈𝐍𝐂𝐑𝐄𝐃𝐈𝐁𝐋𝐄 𝐒𝐓𝐎𝐑𝐘!

Learn more about Corina's inspiring journey -- from getting her Master's degree in Biotechnology, then learning she was gene positive for Huntington's Disease and then her winning "Pooch Perfect", a creative dog grooming reality competition show.

True Blue: Corina Stammworthy Along with her three UB degrees, Corina Stammworthy came up with her business concept in a dream. Now, the founder of Laundromutt dog grooming and daycare se...

𝐓𝐡𝐞 𝐕𝐈𝐏 𝐬𝐞𝐜𝐭𝐢𝐨𝐧: 𝐯𝐞𝐥𝐯𝐞𝐭 𝐫𝐨𝐩𝐞𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐛𝐫𝐚𝐢𝐧 𝐚𝐧𝐝 𝐡𝐨𝐰 𝐭𝐨 𝐠𝐞𝐭 𝐢𝐧

"New work from two groups advances tools to model the blood-brain barrier and could improve the way drugs are delivered for brain diseases. This builds on our ability to study, and eventually treat, Huntington’s disease."

Read full story from Dr. Sarah Hernandez for more.

The VIP section: velvet ropes for the brain and how to get in New work from two groups advances tools to model the blood-brain barrier and could improve the way drugs are delivered for brain diseases. This builds on our ability to study, and eventually treat, Huntington’s disease.

𝐔𝐧𝐝𝐞𝐫 𝐒𝐨𝐜𝐢𝐚𝐥 𝐒𝐞𝐜𝐮𝐫𝐢𝐭𝐲'𝐬 𝐨𝐮𝐭𝐝𝐚𝐭𝐞𝐝 𝐒𝐒𝐈 𝐫𝐮𝐥𝐞𝐬, 𝐜𝐨𝐮𝐩𝐥𝐞𝐬 𝐬𝐚𝐲 𝐭𝐡𝐞𝐲 𝐜𝐚𝐧'𝐭 𝐦𝐚𝐫𝐫𝐲 - 𝐨𝐫 𝐭𝐡𝐞𝐲 𝐡𝐚𝐯𝐞 𝐭𝐨 𝐡𝐢𝐝𝐞

"In the United States, marriage is considered a fundamental human right. But there is one group that gets harshly penalized when they marry. We're talking about people with significant disabilities, people who rely upon a government benefits program for their income and sometimes for the medical care that keeps them healthy, even keeps them alive. They can lose it all when they marry. NPR investigative correspondent Joseph Shapiro explains."

Read or listen to full story for more.

How an outdated Social Security policy is preventing couples from marrying Under Social Security's outdated SSI rules, couples say they can't marry - or they have to hide

𝐑𝐄𝐌𝐈𝐍𝐃𝐄𝐑!

𝐓𝐡𝐢𝐬 𝐒𝐚𝐭𝐮𝐫𝐝𝐚𝐲, 𝐉𝐮𝐧𝐞 𝟏𝟓𝐭𝐡 𝐢𝐬 𝐭𝐡𝐞 𝐋𝐨𝐮𝐩 𝐂𝐢𝐭𝐲, 𝐍𝐞𝐛𝐫𝐚𝐬𝐤𝐚 𝐖𝐀𝐋𝐊 𝐎𝐅 𝐇𝐎𝐏𝐄 𝐟𝐨𝐫 𝐇𝐮𝐧𝐭𝐢𝐧𝐠𝐭𝐨𝐧'𝐬 𝐃𝐢𝐬𝐞𝐚𝐬𝐞!

Event will be held at the Loup City Community Center (803 "O" St)

--DOORS OPEN AT 10:00AM--

For more info, please contact Janis at (308) 750-4914 or [email protected].

📢 𝐍𝐄𝐖𝐒 𝐀𝐋𝐄𝐑𝐓 - 𝐑𝐄: 𝐈𝐧𝐯𝐞𝐬𝐭𝐢𝐠𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐆𝐞𝐧𝐞 𝐓𝐡𝐞𝐫𝐚𝐩𝐲 𝐀𝐌𝐓-𝟏𝟑𝟎 📢

𝗛𝗗𝗦𝗔 𝟮𝟬𝟮𝟰: 𝗖𝗘𝗢 𝘀𝗵𝗮𝗿𝗲𝘀 𝗼𝗽𝘁𝗶𝗺𝗶𝘀𝗺 𝗳𝗼𝗿 𝗛𝘂𝗻𝘁𝗶𝗻𝗴𝘁𝗼𝗻’𝘀 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆
'Families have resources that could not have been imagined 15 years ago'

Click to read the full article for more on what the president and CEO of the Huntington’s Disease Society of America said at the organization’s 39th annual convention, that took place over the weekend in Spokane, Washington.

The outlook for the Huntington's community has never been brighter, Louise Vetter, president and CEO of the HDSA, said at the organization's annual convention. https://buff.ly/3R3rEwf