How a local woman continues to fight despite a grim prognosis, and the promising research to cure Huntington’s Disease – News 5 Cleveland
Posted: August 16, 2021 at 1:51 am
CLEVELAND There is promising new research out of Cleveland thats giving hope to people around the world who are facing a terrifying future.
Jesse Lis lost her dad, Michael, in April of 2020. He was 64.
More painful, she says, was watching him die for more than a decade from Huntingtons Disease.
It is so scary to watch someone who was so perfect your whole life to deteriorate to nothing, to someone who's unable to walk, talk or even reason, said Lis. That's a really hard blow.
Another heavy blow is realizing it'll happen to you, too.
Huntingtons Disease is a fatal, progressive brain disease often described as having ALS, Parkinson's and Alzheimer's all at the same time.
It is genetic. A child of a parent with Huntingtons has a 50/50 chance of inheriting the faulty gene. Jesse and her family did genetic testing after her fathers diagnosis in 2008 and discovered the disease was pervasive in their family tree.
Jesse has it and knows the cruel fate that awaits. She is 40 years oldin the prime of her life right when it usually hits.
Every day I wake up and think, 'Is today the day that I'm going to trip and fall?' or 'Is today the day where I won't remember something really important?'"
It is a lot to cope with, but Jesse fights to stay positive and works hard to raise money and awareness as the president of the Northeast Ohio chapter of the Huntingtons Disease Society.
I am one of those people who isn't going to stop until I can save others and until I can save my family, she said.
Right now, there is no treatment to prevent or slow Huntingtons Disease, but new research at Case Western Reserve University could help change that.
This really surprised us when we saw the data, said Dr. Xin Qi.
Xin Qi and her team just discovered a potential breakthrough in how to prevent and slow the neuron degeneration that causes Huntingtons disease. She says this treatment is safer and more targeted than previous therapies. It is early, she cautions and says more research and clinical trials are still needed.
If our strategy demonstrates to be useful and safe to patients, I will say best of luck, within five years we may make some breakthrough, she said.
With an estimated 41,000 Americans being symptomatic, and 200,000 at-risk of inheriting Huntingtons, according to the Huntington Disease Society, the findings offer hope that families like Jesses are desperate for.
Its not fair that a fatal brain diagnosis should impact every generation, she said. It's just not fair.
You are invited to help these families. The Team Hope Walk is Sunday, Aug. 15 at the Cleveland Metroparks Zoo. Registration starts at 7 a.m. The 5k starts at 8:30 a.m. and the walk starts at 9 a.m.
The money raised helps pay for social workers for families and also helps fund research for a cure and treatments.
Click here for more info.
Download the News 5 Cleveland app now for more stories from us, plus alerts on major news, the latest weather forecast, traffic information and much more. Download now on your Apple device here, and your Android device here.
You can also catch News 5 Cleveland on Roku, Apple TV, Amazon Fire TV, YouTube TV, DIRECTV NOW, Hulu Live and more. We're also on Amazon Alexa devices. Learn more about our streaming options here.
- Alzheimer's and Genetic Testing: Your Questions Answered - Healthline - March 12th, 2024
- The Evolving Treatment Landscape in EGFR Mutated NSCLC and the Role of Comprehensive Genetic Testing in ... - Cancer Network - March 4th, 2024
- PART II: The Legalities of Pre-Natal Genetic Testing - American Council on Science and Health - March 4th, 2024
- Cord Blood Registry (CBR) by CooperSurgical and Fulgent Genetics Launch Innovative Genetic Testing - PR Newswire - February 13th, 2024
- Australian life insurers support industry ban on use of genetic testing results - Proactive Investors UK - February 5th, 2024
- Predictive genetic testing helps breast cancer patient Tammy Goodsell - East Kent Hospitals University NHS Foundation Trust - February 5th, 2024
- Significance of Early Genetic Testing in HRR-Mutated mCRPC Highlighted by Real-World Observations - Targeted Oncology - January 28th, 2024
- Genetic testing saves lives but can lead to discrimination when it comes to life insurance - ABC News - January 28th, 2024
- Growth of the U.S. DTC Genetic Testing Market | Personalized Nutrition Medicine - Medriva - January 11th, 2024
- Genetic Testing - Mayo Clinic Health System - January 3rd, 2024
- However good genetic testing gets, there will always be plenty of space for you to make a total mess of things entirely of ... - CyclingWeekly - January 3rd, 2024
- Preimplantation Genetic Testing Market is Expected to Reach $1.2 Billion | MarketsandMarkets. - Yahoo Finance - December 25th, 2023
- Prenatal and Newborn Genetic Testing Market Size to Hit Eyes USD 14.72 billion by 2031 | CAGR Of 11. - PharmiWeb.com - December 16th, 2023
- Hereditary Genetic Testing Market Study on Investment Possibilities, Industry Share, and Trends through 2030 - EIN News - May 5th, 2023
- Genetic Testing: What You Should Know - Healthline - April 18th, 2023
- Genetic Testing: How It Works, Types, and Diagnosis | Patient - April 18th, 2023
- Genetic Testing Fact Sheet - NCI - National Cancer Institute - March 31st, 2023
- Tempted to have genetic testing? First ask why - Harvard Health - March 31st, 2023
- DNA Test - Genetic Testing Overview - Cleveland Clinic - February 10th, 2023
- Genetic Disorders: What Are They, Types, Symptoms & Causes - January 25th, 2023
- The Genetics of Cancer - NCI - January 25th, 2023
- Understanding Genetic Testing for Cancer Risk - December 28th, 2022
- Prenatal Genetic Diagnostic Tests | ACOG - December 28th, 2022
- DiGeorge Syndrome - StatPearls - NCBI Bookshelf - December 28th, 2022
- Global Rare Disease Genetic Testing Market Report 2022: Ongoing Conferences to Raise Awareness About Rare and Ultra-Rare Conditions to Boost Growth -... - September 21st, 2022
- Genome Medical and Pierian Announce Collaboration to Optimize Genomic Testing Programs - Business Wire - September 21st, 2022
- DNAfit Review: What It Can and Can't Tell You - Healthline - September 21st, 2022
- Purrsonalised health: The startups and VCs betting on pet genetics - Sifted - September 21st, 2022
- One of my daughters and I have the BRCA1 gene mutation - Insider - September 21st, 2022
- Lab testing transparency will improve patient care and lower costs - MedCity News - September 21st, 2022
- Artificial Intelligence Tool May Help in Early Diagnosis of... - Fragile X News Today - September 21st, 2022
- Feral swine meetings Thursday in Eureka and Libby - The Western News - September 21st, 2022
- Recap: Recent Advances in the Treatment of Metastatic Castration-Sensitive Prostate Cancer - Cancer Network - September 21st, 2022
- Australia moves to future in biotech and medical technologies with billions in new investment - The New Daily - September 21st, 2022
- Ticking away in the back of my mind: what does it mean to know the risk embedded in your DNA? - The Guardian - September 5th, 2022
- Ambry Genetics Publishes 43,000 Patient Study Showing Combined RNA and DNA Analysis Identifies Patients Who Are High-Risk for Cancer but Would Have... - September 5th, 2022
- Genetic Mosaicism Diagnosed in Case of Atypical Angelman Teen |... - Angelman Syndrome News - September 5th, 2022
- Patients and Parents Impacted by SMA May Be Optimistic About Prenatal Testing, Therapies - AJMC.com Managed Markets Network - September 5th, 2022
- Major Depression: The Chemical Imbalance Pillar Is CrumblingIs the Genetics Pillar Next? - Mad In America - Mad in America - September 5th, 2022
- MedGenome Raises $50M To Map The Human Genome - Crunchbase News - September 5th, 2022
- IVF or IUI: Which one to choose for a fertility treatment? - Health shots - September 5th, 2022
- Global Molecular Diagnostics Market is projected to grow at a CAGR of 7.28% by 2032: Visiongain Reports Ltd - Yahoo Finance - September 5th, 2022
- Overview and Prevalence of Dravet Syndrome - Contemporary Pediatrics - September 5th, 2022
- 'It takes toughness and grit' Beasley shares on her breast cancer battle, survivor's journey - Cody Enterprise - September 5th, 2022
- Warning to pregnant Norwegian women as their DNA can be accessed by Chinese authorities - ScandAsia.com - September 5th, 2022
- Global Molecular Diagnostics Devices and Equipment Market Report 2022: A $46.87 Billion Market in 2026 - Long-term Forecast to 2031 -... - September 5th, 2022
- Hereditary Prostate Cancer Genetic Testing: Motivation & Family Communication - Physician's Weekly - August 20th, 2022
- Restrictive abortion laws are limiting the options parents have after receiving genetic test results, experts say - Yahoo Philippines News - August 20th, 2022
- Conversations with a friend on IVF genetic testing - Malta Independent Online - August 20th, 2022
- How a simple home DNA test unravelled the genetic code that could help prolong my life - The National - August 20th, 2022
- 5 Health Issues That are Genetically Passed Down. Do You Have One? Eat This Not That - Eat This, Not That - August 20th, 2022
- 25 Years After 'Gattaca' Released, What Do Genetic Scientists Think About It? The Wire Science - The Wire Science - August 20th, 2022
- A lasting inheritance: City of Hope replaced my family's fear with hope - City of Hope - August 20th, 2022
- Statistics on Global Esoteric Testing Market Size & Share to Surpass USD 37917.67 Million by 2028, Exhibit a CAGR of 11.10% | Industry Trends,... - August 20th, 2022
- Population Genetic Testing: Save Lives And Money, While Avoiding Financial Toxicity - Forbes - August 11th, 2022
- Care before carrying: The significant role of Preimplantation Genetic Testing during IVF - Times of India - August 11th, 2022
- More on Professor Sarnoff's Perspective on Tillis Patent Eligibility Bill - JD Supra - August 11th, 2022
- The Silver Lining Of Innovation in Genetic Medicine - Pharmaceutical Executive - August 11th, 2022
- High susceptibility of animal-borne disease transmission to humans has pushed the animal genetics market to surpass ~ US$ 8 Billion by 2026 - BioSpace - August 11th, 2022
- Fulgent Genetics Announces Launch of PCR Based Test to Detect Monkeypox - Business Wire - August 11th, 2022
- INVITAE CORP 10-Q Management's Discussion and Analysis of Financial Condition and Results of Operations - Insurance News Net - August 11th, 2022
- U.P. man found guilty of poaching multiple 8-point deer ordered to pay $18K in restitution - MLive.com - August 11th, 2022
- Testing, Inspection, And Certification Market Worth $491.3 Billion by 2030: Grand View Research, Inc. - PR Newswire - August 11th, 2022
- BRCA Gene Mutation Can Be Passed Down From Father's Side - SurvivorNet - August 11th, 2022
- The Worldwide Genetic Testing Industry is Expected to Reach $26 Billion by 2027 - ResearchAndMarkets.com - Galveston County Daily News - July 26th, 2022
- Genetic testing may benefit patients with depression - VAntage Point - VAntage Point Blog - July 26th, 2022
- What Does it Mean to be High Risk for Breast Cancer? - Integris - July 26th, 2022
- Boy has rare genetic disease, life expectancy is five to 10 years - Insider - July 26th, 2022
- Preimplantation Genetic Testing Market Research | Industry Growing with Major Key Player Illumina, Inc (U.S.), SciGene Corporation (U.S.), Thermo... - July 26th, 2022
- Direct-To-Consumer (DTC) Genetic Testing Market Size, Scope, Growth Opportunities, Trends by Manufacturers And Forecast to 2029 This Is Ardee - This... - July 26th, 2022
- World IVF Day: 4 benefits of IVF treatment at the right age - Health shots - July 26th, 2022
- Global Metabolic Panel Testing Market to Grow with a CAGR of ~7% During 2022-2031; Market Growth to be Propelled by Increasing Prevalence of Chronic... - July 26th, 2022
- 3 Reasons to Buy This Sizzling Growth Stock - The Motley Fool - July 26th, 2022
- Monkeypox, yet another health emergency for world to cope with - China Daily - July 26th, 2022
- Rhinostics Launches the VERIstic to Redefine Small Volume Blood Collection - BioSpace - July 26th, 2022
- Direct-To-Consumer (DTC) Genetic Testing Market Size, Forecast And Trend Analysis To 2028 This Is Ardee - This Is Ardee - July 26th, 2022
- PSS: Providing quick and effective solutions - The Worldfolio - July 26th, 2022
- Prevencio Announces Agreement with Alivio Health Expanding Access to AI-Driven Cardiac HART Tests Offered by Atlas Genomics - Business Wire - July 26th, 2022
- Myriad Genetics Teams Up with Epic to Make Genetic Testing Accessible to More Patients with Electronic Health Record (EHR) Integration - GlobeNewswire - June 28th, 2022
- Global Predictive Genetic Testing And Consumer/Wellness Genomics Market Emerging Scope Of The 2022 | Illumina, BGI, Genesis Genetics, Myriad Genetics ... - June 28th, 2022