{"id":58623,"date":"2015-08-26T19:22:58","date_gmt":"2015-08-26T23:22:58","guid":{"rendered":"https:\/\/rarediseases.org\/giving-spotlight-paula-mann-honors-son-garrett-with-donation-to-nord\/"},"modified":"2015-08-26T19:22:58","modified_gmt":"2015-08-26T23:22:58","slug":"giving-spotlight-paula-mann-honors-son-garrett-with-donation-to-nord","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/giving-spotlight-paula-mann-honors-son-garrett-with-donation-to-nord\/","title":{"rendered":"Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD"},"content":{"rendered":"

\u00a0\u201cI really appreciate all that NORD does for those living and managing their lives with rare disorders.\u201d -Paula Mann<\/strong><\/p>\n

Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial Disease, a rare disease that can be present at birth or come on later in life. \u00a0He passed away in 2012. \u00a0\u201cThis was my and my husband\u2019s first introduction to rare diseases,\u201d says Paula. \u00a0\u201cIn advocating for him and traveling many distances to seek expert medical treatment and possible clinical trials, the disease proved greater and eventually took his life six weeks prior to his fourth birthday.\u201d<\/p>\n

\u201cIt was through Garrett that we were introduced to other children and families fighting rare diseases and realized there is not enough dedication to this area of medicine,\u201d she added.<\/p>\n

Since Garrett\u2019s passing, Paula and her husband have continued to fight for those who may not know how.\u00a0 She met with her local congressperson to advocate for more funding for research to find treatments and cures, and she met with Chuck Mohan, Jr., President and CEO of the United Mitochondrial Disease Foundation, to identify areas of need.<\/p>\n

They also teamed up with Make-A-Wish Foundation<\/a> to create a scholarship in Garrett\u2019s memory, and volunteer at Give Kids the World<\/a>, where children with life-threatening illnesses can escape the hardships of hospitals and treatments for a week and enjoy all that they can while visiting Disney and other area theme parks.<\/p>\n

Through her efforts to help others, Paula has caught the attention of many people, including her employer, Novartis Oncology.\u00a0 Novartis Oncology awarded Paula the Mike Lellyo Award, an internal award given to those who commit their lives to helping advocate for others. Created in honor of Mike Lellyo, who encompassed a life of selflessness through volunteering and advocating for others and who passed away suddenly, the award is designed to recognize individual effort and dedication in putting the patient\u2019s interest and welfare first.<\/p>\n

\u201cOne aspect of winning the Mike Lellyo Award is to choose a charitable organization where Novartis can make a donation,\u201d said Paula.\u00a0 \u201cI have wholeheartedly chosen the National Organization for Rare Disorders for many reasons. Most importantly, I know the emotional, physical and financial strain that patients and loved ones can experience while living with these rare conditions. I believe in your mission and am honored to make this donation on behalf of our son.\u201d<\/p>\n

Garrett was given the challenge of living his life fully, while fighting a rare disease.\u00a0 Paula\u2019s hard work and dedication continues the fight for Garrett and others affected by Mitochondrial Disease.\u00a0 We are grateful to Paula for her donation to NORD, which helps us continue to fight for Mitochondrial Disease and the other 7,000+ rare diseases.<\/p>\n

If you are interested in making a gift to NORD through workplace giving or in honor of a loved one, visit our Ways to Donate<\/a> page or contact Ahleum Morris, amorris@rarediseases.org<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

\u00a0\u201cI really appreciate all that NORD does for those living and managing their lives with rare disorders.\u201d -Paula Mann Paula Mann is a mother of a boy, Garrett, born in … <\/p>\n

Continue reading “Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":11962,"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":[505],"tags":[722,715,717,721,723,714,720,718,719,716],"class_list":["post-58623","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","tag-disney","tag-donate","tag-garrett-mann","tag-give-kids-the-world","tag-giving-spotlight","tag-giving-to-nord","tag-make-a-wish-foundation","tag-mitochondrial-disease","tag-novartis-oncology","tag-paula-mann"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58623","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\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58623"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58623\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11962"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58623"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58623"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58623"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}