{"id":58750,"date":"2016-08-03T17:32:37","date_gmt":"2016-08-03T21:32:37","guid":{"rendered":"https:\/\/rarediseases.org\/guest-blog-tour-for-a-cure\/"},"modified":"2022-12-01T11:58:58","modified_gmt":"2022-12-01T16:58:58","slug":"guest-blog-tour-for-a-cure","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/guest-blog-tour-for-a-cure\/","title":{"rendered":"Guest Blog: Tour For A Cure"},"content":{"rendered":"
\u00a0By Alison Rockett Frase, Guest Blogger<\/div>\n

In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. Through the despair and dismay, a vision of faith and hope was birthed through the Joshua Frase Foundation. Our vision seemed like a dream from the outset, but with fortitude, perseverance and resolve, we embarked on a journey to understand the pathology of this disorder by building a trans-Atlantic team of world-renowned researchers. Our endeavor to unlock the mysteries of MTM has culminated in our ability to give guarded hope to families across the world that their child might have hope for a brighter future. Joshua Miles\u2019 legacy will be one of life, hope and love as we come to the final chapter.\u00a0 Our goal is in sight.<\/em><\/p>\n

\"alison<\/a>
Francesco blowing Alison a kiss in Italy<\/figcaption><\/figure>\n

In May, I experienced the\u00a0trip a lifetime!\u00a0 I was given the opportunity to visit our European MTM families,\u00a0and all\u00a0the pieces\u00a0to make this trip possible\u00a0fell into place.\u00a0My\u00a0good friend,\u00a0Lisa Nickerson\u00a0who worked for JFF many moons ago, came with me as my tour guide and\u00a0wingman. Lisa is a publicist extraordinaire, and she helped me document the trip. We dubbed this trip the \u00abTour for a Cure.\u00bb \u00a0To be able to spend time with families I\u00a0have been communicating with for many years and to meet\u00a0their children meant more to me than words can express.<\/p>\n

The whirlwind of a trip was spread out over two weeks, and across four\u00a0countries. I began\u00a0in the beautiful city of Rome,\u00a0spending\u00a0time with\u00a0three of our\u00a0Italian families and\u00a0their precious children.\u00a0Their\u00a0hospitality and warmth they shared made me feel like family, like I was home.\u00a0I\u00a0then attended\u00a0a workshop in Amsterdam\u00a0hosted by the\u00a0European\u00a0Neuromuscular Center<\/a>\u00a0(ENMC) focused on Titinopathies. Very exciting work is being accomplished for this\u00a0indication. From there\u00a0it was on to\u00a0Paris to film a\u00a0documentary with\u00a0one\u00a0of our rock\u00a0star researchers, Anna Buj Bello. I spent a\u00a0long day\u00a0at\u00a0Genethon<\/a>\u00a0with Anna and\u00a0The French Muscular Dystrophy<\/a>\u00a0(AFM) production crew filming for five hours on the\u00a0latest in\u00a0gene\u00a0therapy research and the progress being made. Last but not least, I\u00a0traveled to Frankfurt, Germany to attend\u00a0the\u00a02016\u00a0ZNM Myotubular\u00a0Trust\u00a0European\u00a0Family Conference<\/a>.\u00a0 The theme of the conference was #TogetherEvenStronger. Although there was a language barrier, there was a\u00a0depth of\u00a0understanding and\u00a0compassion\u00a0present that\u00a0transcended\u00a0words.<\/p>\n

\"Guest<\/a>
Mare and Allison with his parents, Claudia and Alesandro in Italy<\/figcaption><\/figure>\n

I feel like we are in the final stage of this two-decade journey, but, as we all know the final stage of the marathon is often hardest.\u00a0Prior to this trip, I was exhausted. Working so hard, for so long, with no concrete end in sight is sometimes more than I can bear. It\u2019s even harder when we lose children. This year, we\u2019ve lost seven \u2013 that\u2019s an average of one a month. Not only is that devastating for our community, but more importantly, that\u2019s seven families who will have to live with this loss for the rest of their life. But, when I saw our European children in person they reminded me of Joshua. There was something there in their playful personalities that energized me.<\/p>\n

I returned home after an emotional\u00a0whirlwind of a\u00a0trip\u00a0with the finish line in sight.\u00a0To be able to hold and love on these families,\u00a0and to give hope in a seemingly hopeless situation has given me\u00a0a renewed drive to press on in support of the\u00a0cure.<\/p>\n

Alison Rockett Frase is founder and president of the Joshua Frase Foundation<\/a>, a NORD Member Organization<\/em><\/p>\n

\"In<\/a>
In Rome with Alessandro, Marta, Chiara, Ivan, Alison holding Mattia, and Daniele<\/figcaption><\/figure>\n

 <\/p>\n

\"Mare<\/a>
Alison, Erik, Elke, and Luca<\/em><\/em><\/figcaption><\/figure>\n

 <\/p>\n

Learn about the Joshua Frase Foundation and NORD’s other Member\u00a0<\/em>Organizations here<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

\u00a0By Alison Rockett Frase, Guest Blogger In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. … <\/p>\n

Continue reading \u00abGuest Blog: Tour For A Cure\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"featured_media":12231,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[192],"tags":[1193,212,351,278,452,455],"class_list":["post-58750","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","tag-alison-rockett-frase","tag-gene-therapy","tag-guest-blog","tag-guest-blogger","tag-joshua-frase-foundation","tag-myotubular-myopathy"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58750","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58750"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58750\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12231"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58750"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58750"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58750"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}