{"id":12984,"date":"2023-05-08T14:42:19","date_gmt":"2023-05-08T18:42:19","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=12984"},"modified":"2025-07-23T09:26:42","modified_gmt":"2025-07-23T13:26:42","slug":"jenna-woodard-the-hd-community-has-held-my-hand-every-step-of-the-way","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/jenna-woodard-the-hd-community-has-held-my-hand-every-step-of-the-way\/","title":{"rendered":"Jenna&#8217;s Huntington&#8217;s Disease Story"},"content":{"rendered":"\n<p class=\"core-block core-paragraph\"><em>Jenna Woodard is a Huntington\u2019s disease (HD) patient and advocate from Albany, NY. She serves as an advocacy chair, youth mentor and ambassador for the Huntington\u2019s Disease Youth Organization (HDYO).<br><br>Do you have a rare disease story to share? Contact our team at <a href=\"mailto:shareyourstory@ptcbio.com\">shareyourstory@ptcbio.com<\/a>.<\/em><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p class=\"core-block core-paragraph\">Hi, my name is Jenna. I am 22 years old, and I have Huntington\u2019s disease (HD).<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">The story of my diagnosis is a bit different because I wasn\u2019t tested at a Center of Excellence like most people. During a routine check-up with my pediatrician, I was accidentally told I was at risk for HD. At the time, I barely knew what having HD meant. My mom explained it as an incurable and genetic brain disorder I inherited from my father.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">At 18, I was tested in the neurology clinic at a world-renowned hospital. The doctor\u2019s bedside manner was awful and that took a heavy toll on me. I reached out to my father, and he was not helpful either. I was so lost and alone. I felt this way for two years until I met the incredible staff at my local Center of Excellence. They connected me to a support group via Zoom. When we finally met in person at a Gala, I was also introduced to members of the local chapter board and invited to join. A year later, I am the advocacy chair, a youth mentor for <a href=\"https:\/\/nya.hdsa.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">National Youth Alliance<\/a> (NYA) and an ambassador for the <a href=\"https:\/\/www.hdyo.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">Huntington\u2019s Disease Youth Organization<\/a> (HDYO).<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">After feeling lost for so long, this was a complete change for me. I was surprised how I felt welcomed and at home. The HD community has held my hand every step of the way and given me so many new friends and mentors. I went from hating this disease to feeling grateful for it. This may not have been a part of my plans, but HD sure has a plan for me.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-1024x768.jpg\" alt=\"Jenna, standing behind a table wearing a shirt that says &quot;I am a Huntington's Disease Warrior&quot;\" class=\"wp-image-12985\" srcset=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-1024x768.jpg 1024w, https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-300x225.jpg 300w, https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-768x576.jpg 768w, https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-1536x1152.jpg 1536w, https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-2048x1536.jpg 2048w, https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/05\/Jenna-Woodard-400x300.jpg 400w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>In this issue of Patient Voices, Jenna shares her journey with HD.<\/p>\n","protected":false},"author":2,"featured_media":16115,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,60],"tags":[],"media-type":[5],"therapeutic-area":[13],"class_list":["post-12984","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community","category-rare-journeys"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - 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