{"id":700,"date":"2018-11-23T16:32:31","date_gmt":"2018-11-24T00:32:31","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=700"},"modified":"2018-11-23T16:52:01","modified_gmt":"2018-11-24T00:52:01","slug":"thankful-for-you-please-lets-keep-it-up","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=700","title":{"rendered":"Thankful for you. Please, let\u2019s keep it up."},"content":{"rendered":"

On Sunday night, November 11th, the Neuromuscular Disease Foundation hosted its most successful event to date. The Gala for the Arts was a sold out evening that brought together\u00a0exquisite\u00a0art and\u00a0beautiful music. It was an opportunity to celebrate\u00a0honorary\u00a0members of\u00a0the GNE Myopathy community\u00a0along with\u00a0the\u00a0exciting $2.5 million\u00a0matching grant the NDF recently\u00a0received from an anonymous charitable\u00a0foundation.<\/p>\n

I am\u00a0absolutely thrilled to share that with over 450 attendees, and many\u00a0viewers through our\u00a0live-stream, we were able to raise\u00a0just over $1 Million towards our goal,\u00a0making for a total of $1.7M raised so far all year\u00a0through grants, sponsorships, donations and pledges!\u00a0\u00a0This means we are only $800k away from our goal that will allow us to start funding gene therapy trials!\u00a0<\/strong><\/p>\n

At the gala, I had\u00a0the honor of presenting the \u201cPhilanthropy Award\u201d to David Dahl\u00a0who was the individual responsible for steering the NDF towards this incredible,\u00a0rare and highly competitive grant\u00a0opportunity. In my remarks, I\u00a0shared how the NDF has evolved\u00a0from a small grass roots effort\u00a0that began in my mother\u2019s living room into an international organization with representation in 23 countries around the globe. Quite honestly, that fact still blows my mind. And yet, it\u2019s simply an example of\u00a0what one community can do with enough passion, dedication and hope.<\/p>\n

I personally want to thank all of my dear friends and family members who have been able to show up in all the ways that mean so much to me- physically, financially and emotionally.<\/p>\n

We are almost there, but we\u00a0still need your help. \u00a0If you have already donated, I am so grateful for your generosity.\u00a0If you could spread the word to\u00a0people or organizations who you think may be interested in making a meaningful, tax-deductible donation to the NDF, it would be so appreciated.<\/p>\n

I recognize that our\u00a0world needs so much from all of\u00a0us right now. On\u00a0behalf of\u00a0GNE Myopathy patients around the globe, we are truly grateful for any contribution you would consider making.<\/p>\n

Thank you for helping us take\u00a0these next steps towards our future…<\/p>\n

Much love and gratitude,<\/p>\n

Jen<\/p>\n

CLICK HERE TO HELP US REACH OUR GOAL<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

On Sunday night, November 11th, the Neuromuscular Disease Foundation hosted its most successful event to date. The Gala for the Arts was a sold out evening that brought together\u00a0exquisite\u00a0art and\u00a0beautiful music. It was an opportunity to celebrate\u00a0honorary\u00a0members of\u00a0the GNE Myopathy community\u00a0along with\u00a0the\u00a0exciting $2.5 million\u00a0matching grant the NDF recently\u00a0received from an anonymous charitable\u00a0foundation. I am\u00a0absolutely thrilled<\/p>\n

Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":704,"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-700","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\/11\/IMG_2446.jpg?fit=800%2C533&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-bi","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":14,"url":"https:\/\/livingwithhibm.com\/?p=14","url_meta":{"origin":700,"position":0},"title":"My speech from this year’s NDF Gala","author":"admin","date":"November 14, 2013","format":false,"excerpt":"Below is the link to the speech I gave as an honoree at this year's NDF Gala at the Beverly Hills Hotel on October 17th, 2013. It was an incredibly successful event, selling out to over 600 guests and raising almost half a million dollars. \u00a0Thank you to everyone who\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\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":691,"url":"https:\/\/livingwithhibm.com\/?p=691","url_meta":{"origin":700,"position":1},"title":"Desperation, Hope and a Plea","author":"admin","date":"October 9, 2018","format":false,"excerpt":"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\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/10\/img_1719.jpg?fit=362%2C200&ssl=1&resize=350%2C200","width":350,"height":200},"classes":[]},{"id":114,"url":"https:\/\/livingwithhibm.com\/?p=114","url_meta":{"origin":700,"position":2},"title":"My speech from this year’s NDF gala","author":"admin","date":"November 28, 2014","format":false,"excerpt":"I am so thankful for all the people who tirelessly dedicated themselves to making this year's NDF gala yet another successful event. You can click on the link below to watch my speech... \u00a0 My speech from this year's NDF gala 2014","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":30,"url":"https:\/\/livingwithhibm.com\/?p=30","url_meta":{"origin":700,"position":3},"title":"Jennifer’s NDF-HADASSAH Speech from the Fundraising Gala for HIBM Resear…","author":"admin","date":"February 22, 2012","format":false,"excerpt":"","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":770,"url":"https:\/\/livingwithhibm.com\/?p=770","url_meta":{"origin":700,"position":4},"title":"The NDF ARTS GALA","author":"admin","date":"October 31, 2019","format":false,"excerpt":"I\u2019ll be be honest, it feels like there\u2019s a lot of darkness out there these days. 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Maybe because it felt exhibitionistic or maybe because doing so presumes people will be interested in what I have to say. But recently, I have felt a need, an urgent and desperate need to express myself- to share what's going on with me and my\u2026","rel":"","context":"With 5 comments","block_context":{"text":"With 5 comments","link":"https:\/\/livingwithhibm.com\/?p=36#comments"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/700","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=700"}],"version-history":[{"count":2,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/700\/revisions"}],"predecessor-version":[{"id":709,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/700\/revisions\/709"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/704"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=700"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=700"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=700"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}