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Champions for HD: Media & Press facebook_untitled facebook_untitled honored. blessed. humbled facebook_untitled 1/5 Articles/News Features November 2022: fox17 morning mix interview - Champions for HD benefit concert raising money to fight against Huntington's Disease WATCH HERE April 2022:Hopkins Teen With Rare Disease Surprised With New Wheelchair: ‘It Was Great To See Her Smile’ WATCH HERE ​ April 2022:HOPKINS STUDENT WITH HUNTINGTON’S DISEASE SURPRISED WITH FREE WHEELCHAIR WATCH HERE Nov. 2021: Shelby Lentz speaks with Fox17 About the 4th annual benefit concert WATCH HERE Oct. 2021: Shelby Lentz speaks with HDYO About "Brave BReanna" WATCH HERE Oct. 2021: Huntington's Disease NEws article on Champions for hd & shelby lentz READ HERE AUg. 2021: Shelby Lentz Talks "Brave Breanna" On Help4HD LIve LISTEN HERE AUg. 2021: Shelby Lentz Talks "Brave Breanna" On Supertalk Mississippi WATCH HERE AUg. 2021: "Brave Breanna": Woman creates children's book in honor of late sister- Fox17 READ HERE DEc. 2019: Featured in Statnews article READ HERE Oct. 2019: Benefit Concert promotion on Fox 17 WATCH Jan. 2019: Pay it Forward Person of the Month, Fox 17 WATCH Nov. 2018: WOTV Appearance WATCH Jan. 2018: A crowning moment for Huntington’s disease -Spectrum Health Article READ HERE

Research Opportunities HD/JHD Patients & Caregivers Study A Speech-Language Pathology graduate student (Paige Wikman) and her professor (Dr. Therese O’Neil-Pirozzi) at Northeastern University in Boston are doing an IRB-approved study to explore perspectives of individuals with Huntington’s Disease and their caregivers in areas of quality of life and eating/swallowing (link to study flyer). They are interested in how self-reports of individuals with Huntington’s Disease compare to those of their caregivers in these areas. If you have a medical diagnosis of Huntington’s Disease, you and a caregiver who knows you well, may be eligible to participate in this 20-30 minute-long study. If you are interested in participating or would like to know more about this study, click the button below to schedule a time with Paige or email her at (wikman.p@northeastern.edu) for more information. Schedule a Meeting

Healthcare Resources Genetic Testing Genetic testing allows an individual who is at-risk of having Huntington's Disease know with certainty if they have the disease. Every individual has two copies of each gene, one inherited from the mother and the other from the father. Huntington's disease patients have an unusually high number of CAG repeats in either of the two HTT gene copies. ​ Those with a repeat of 26 or fewer are "normal." A repeat of between 27 to 35 are in "the intermediate range." In this area, although the patient will not develop the disease, they are still at-risk of passing it on to they children. With CAG repeats between 36-39, it cannot be predicted with certainty whether the individual will develop Huntington’s disease. CAG repeats that are 40 and above are considered "gene-positive." This means at some point in your life you will develop the symptoms of the disease, but there currently is no way to know for certain when and how severely the onset of those symptoms will come. ​ Children who become symptomatic at a young age and have a very unusually high CAG repeat number have what is known as Juvenile Huntington's Disease . This is a children's version of the disease that has a much earlier onset age and a more rapid onset of symptoms. Most JHD patients usually have between 80 and 100 CAG repeats. LEARN MORE ABOUT GENETIC TESTING PicnicHealth If you are living with HD and are looking for tools to help access & organize your medical records and ways you can contribute to your community, join PicnicHealth. ​ PinicHealth is a health tech company that understands how challenging it is to access and share your medical records when you need them. With their technology, they do all the work of retrieving and organizing all of your (or your loved ones) records (including imaging!) in one place so you have it at your fingertips whenever you need it. With your consent, they help leverage the de-identified data found within these medical records, allowing you to contribute to real-world data research from home. ​ Reasons to Register PicnicHealth’s mission and commitment to advancing research in the HD community Picnic's technology can help improve how you manage your care What “real world data” is and how it can help transform research in HD Your story and voice matter! ​ Learn more and sign up here . You will receive $200 upon confirmation of a Huntington's Disease (HD) diagnosis or Positive genetic test for Huntington’s Disease. JOIN PICNICHEALTH

Miracle at South Haven Brewpub

6th Annual Benefit Concert Performers Shelby Lentz (Smith ers) Shelby's Website While she may be petite in stature, Shelby Lentz has a voice that will fill any venue. At just fifteen she opened at The State Theater in Kalamazoo for Warner Music artist, Frankie Ballard. It was also about this time that she began collaborating with local song writers on original music as well. She went on to also open for former American Idol finalist, Matt Giraud, as well as international recording artist, Joanne Shaw Taylor, and country act, Montgomery Gentry. Shelby spent two years pursuing music in Nashville, Tennessee where she attended Belmont University and worked at the Grand Ole Opry. She recorded two studio EPs while in Nashville and performed on Broadway at the famous Tootsies. Her second EP, entitled “Unbroken” features a song called “Champion” Lentz co-wrote with her friend, Jessica Kellie Adams, inspired by Sylvester Stallone’s Rocky Balboa films. After the diagnosis of Huntington’s Disease in her family, and being recently diagnosed herself, she began her own nonprofit, “Champions for HD” to help aid research as well as other local families struggling with this disease. This was named in honor of her song “Champion” that is now recognized as an HD power anthem and part of her musical proceeds go back to Champions for HD to further the fight against Huntington’s. Shelby recently release her fist official album "Teenage Diary," all songs she wrote between the ages of 13-19, which is streaming everywhere now. There is no doubt that this little girl packs a powerful punch as an experienced entertainer. Sarah Dudinetz After graduating with a degree in Advertising & Public Relations from Grand Valley State University, Sarah started working at A.K. Rikk's as a Social Media and Communications Specialist. She has been a competitor in the Miss America Organization for a decade (which is how she got to know Shelby), and was first-runner up at Miss Michigan in 2019. While she has no personal connection to Huntington's Disease, as she's watched Shelby passionately share her story, she decided to use her skills and talents to help Shelby through marketing. Sarah's Website Delaney Lentz Delaney is a recent gradate from the University of Alabama, with a degree in Marketing. Currently, she is pursuing a master's degree in data analytics at Loyola University. She is Shelby's sister, and is at-risk for inheriting Huntington's Disease. She has seen first hand the trauma of HD as four of her family members currently have the disease. Delaney also has a passion for the arts and has been singing and performing for years with her sister, in musicals, and at local Miss America pageants. At Alabama, she was in HallyUA, a dance and social club centered around Kpop at the University of Alabama. Follow Delaney Bernice Rodgers Bernice Rodgers currently resides in Niles, MI with her husband of 18 years and her two children both 9 and 17. They say she came out the womb singing! She has a great passion for singing and acting and has been in local plays, musicals, and such things over her 40 years of living. She has a deep passion to serve and help others which is why she chose to go into the medical field. These days she spends her time serving at her local church by singing on the praise team and helping in the outreach ministry, “for God is yet in the saving business!" Back at home she is the primary caretaker to my aunt who has HD. They have our good and bad days, and many challenges, but with God all things are possible and He gives her the strength to take care of her each and every day. She truly believes this is what she was called to do, to God be the glory!! With much prayer and getting more awareness and studies on this illness she believes they can find better treatments and make life better for those who suffer from HD. Thank you to our Sponsors:

Miracle at South Haven Brewpub 2019 Out of gallery

6th Annual Benefit Concert Sponsorship Levels Thank you to our Sponsors:

SHUR-TO-FIND-A-CURE 4-SATURDAYS from 8:30am to 10am FEBRUARY 11th, 18th, 25th, and March 4th Email Benjamin

Webinars PicnicHealth: HD Join us to learn about how PicnicHealth can help you keep your medical records organized while contributing to research! ​ If you are living with HD and are looking for tools to help access & organize your medical records and ways you can contribute to your community, join us for PicnicHealth's informational session and Q&A! ​ PicnicHealth is a health tech company that understands how challenging it is to access and share your medical records when you need them. With their technology, they do all the work of retrieving and organizing all of your (or your loved ones) records (including imaging!) in one place so you have it at your fingertips whenever you need it. With your consent, they help leverage the de-identified data found within these medical records, allowing you to contribute to real-world data research from home. ​ When you attend, you’ll learn about: PicnicHealth’s mission and commitment to advancing research in the HD community How their technology can help improve how you manage your care What “real world data” is and how it can help transform research in HD ​ Your story and voice matter! ​ Learn more and sign up here . You will receive $200 upon confirmation of a Huntington's Disease (HD) diagnosis or Positive genetic test for Huntington’s Disease.

Concert of Hope TBD Trubble Brewing 2725 Broadway St. Fort Wayne, Indiana 46807