{"id":691,"date":"2018-10-09T18:59:16","date_gmt":"2018-10-10T01:59:16","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=691"},"modified":"2018-10-09T19:31:02","modified_gmt":"2018-10-10T02:31:02","slug":"desperation-hope-and-a-plea","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=691","title":{"rendered":"Desperation, Hope and a Plea"},"content":{"rendered":"

I\u2019m going to keep this post short and to the point because I need your attention now more than ever. In fact, I need your help.<\/p>\n

A few weeks ago, I attended the 5th annual Neuromuscular Disease Foundation symposium, which brought together patients and scientists from around the world.<\/p>\n

It gets harder for me\u00a0to attend every year.\u00a0I am no longer the least progressed patient in the room. I see patients who can still walk without leg braces or a cane and I search for vestiges of my former body in theirs. I instead recognize my body and its awkward movements in those of patients farther along. \u00a0I see my emaciated forearms. And then I am surprised to see upper arms on other patients that have also wasted away. I see the fate that may await me as I watch caretakers, spouses, and parents assist their loved ones- adjusting their eye glasses, feeding them lunch, draping sweaters over their shoulders.<\/p>\n

For the first time in 13 years, I looked around the room and\u00a0started to feel defeated in the battle against this disease. Until\u00a0Lal\u00e9 Walsh, the executive director of the NDF,\u00a0made this announcement:<\/p>\n

A private foundation has generously offered the NDF a $2.5 million\u00a0matching<\/em>\u00a0grant to fund gene therapy.\u00a0<\/strong>Gene therapy is the most promising treatment at this time. Gene therapy offers more than just the potential to slow down progression. It offers us a chance to stop it. A chance to be lucky enough to remain as disabled as we are. It may even allow for mild improvement.<\/p>\n

We need to raise $1 million by the end of 2018 in\u00a0order to receive any of the\u00a0grant money.\u00a0That is a daunting number and<\/em>\u00a0I do believe we can do it. For patients like me,\u00a0for our children and loved ones and for our community at large.<\/p>\n

Please consider buying a ticket to the\u00a0\u00a0\u201cGala for the Arts\u201c\u00a0on Sunday night, November 11th at the\u00a0Skirball cultural center. Invite others to attend.\u00a0There will be a paddle raise and an opportunity to donate in person there. You can also donate by clicking the link below. Every amount matters.<\/p>\n

I truly hate how\u00a0becoming disabled has forced me to ask for help on a daily basis, both from loved ones and\u00a0total strangers.\u00a0It is uncomfortable and yet, I have no choice. This feels like\u00a0one of those times when I have no choice but to ask.\u00a0I will\u00a0tolerate any level of discomfort\u00a0\u00a0to not lose this opportunity.<\/p>\n

I am counting on your generosity to make this happen. Thank you for your support. It means everything.<\/p>\n

Click to donate\/ buy gala tickets<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

I\u2019m going to keep this post short and to the point because I need your attention now more than ever. In fact, I need your help. A few weeks ago, I attended the 5th annual Neuromuscular Disease Foundation symposium, which brought together patients and scientists from around the world. It gets harder for me\u00a0to attend<\/p>\n

Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":694,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-691","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/10\/img_1719.jpg?fit=362%2C200&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-b9","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":15,"url":"https:\/\/livingwithhibm.com\/?p=15","url_meta":{"origin":691,"position":0},"title":"The Jennifer Room","author":"admin","date":"September 29, 2013","format":false,"excerpt":"About a month ago, I received an invitation to attend a \"Patient Day\" reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM. \u00a0Dr. Kakkis was\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":348,"url":"https:\/\/livingwithhibm.com\/?p=348","url_meta":{"origin":691,"position":1},"title":"I feel","author":"admin","date":"August 22, 2017","format":false,"excerpt":"I feel sad. I feel deflated. I feel disheartened. I feel angry. I feel betrayed. I feel frustrated. I feel helpless. I feel overwhelmed. I feel rage. I feel tired. I feel drained. I feel exhausted. I feel scared. I feel terrified. I feel desperate. While innocently scrolling through Facebook\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":254,"url":"https:\/\/livingwithhibm.com\/?p=254","url_meta":{"origin":691,"position":2},"title":"Coming clean","author":"admin","date":"September 1, 2016","format":false,"excerpt":"Tonight the Neuromuscular Disease Foundation hosted a dinner party to celebrate its 10 year anniversary. It was an opportunity to bring together scientists, researchers, NDF board members and patients living with HIBM. It was not a fundraiser, but rather an evening to thank everyone who's been involved over the years\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":243,"url":"https:\/\/livingwithhibm.com\/?p=243","url_meta":{"origin":691,"position":3},"title":"Finally, I’m here. I’ve arrived!","author":"admin","date":"March 10, 2016","format":false,"excerpt":"When I was first diagnosed with HIBM (or as it's now often called, GNE myopathy) almost 10 years ago, I couldn't even say the name of the disease out loud. I could barely accept that I had it. I didn't want anything to do with it. 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One with an index where I could look up what to expect a year, two years or 10 years from disease onset? 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