{"id":59183,"date":"2020-09-17T12:41:50","date_gmt":"2020-09-17T16:41:50","guid":{"rendered":"https:\/\/rarediseases.org\/head-of-the-herd-amber-freed-founder-and-ceo-slc6a1-connect\/"},"modified":"2020-09-17T12:41:50","modified_gmt":"2020-09-17T16:41:50","slug":"head-of-the-herd-amber-freed-founder-and-ceo-slc6a1-connect","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/head-of-the-herd-amber-freed-founder-and-ceo-slc6a1-connect\/","title":{"rendered":"Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect"},"content":{"rendered":"

Head of the Herd Spotlight, Amber Freed SLC6A1 Connect<\/strong><\/p>\n

At the Head of the Herd is…<\/strong> Amber Freed, Founder and CEO, SLC6A1 Connect.<\/p>\n

Amber advocates for… <\/strong>children living with the rare neurological condition SLC6A1 and their families.<\/p>\n

Amber is located in… <\/strong>Denver, Colorado.<\/p>\n

You can follow Amber and SLC6A1 Connect… <\/strong>on Facebook<\/a> and Twitter<\/a>.<\/p>\n

How Amber got here… <\/strong><\/p>\n

I became involved in the rare disease community when my two year-old son, Maxwell, was diagnosed with SLC6A1. I left my career in equity analysis the day he was diagnosed and dedicated my life to finding a cure.<\/p>\n

How Amber\u2019s previous experiences lend to her new work in rare disease…<\/strong><\/p>\n

I spent my career as an expert in research, but in a financial capacity as an equity analyst. When Maxwell was diagnosed, I took all of the research skills I had and focused them on understanding my son\u2019s disease and, more importantly, developing a research plan to cure the disease.<\/p>\n

What Amber hopes to see SLC6A1 Connect accomplish in the next five years…<\/strong><\/p>\n

What we\u2019re trying to accomplish is funding the necessary translational research to develop a gene replacement therapy for SLC6A1. My hope is that our organization won\u2019t exist in five years because there will be a cure to SLC6A1 in place. By that time, I\u2019d like to have moved on to creating a gene replacement therapy for the next rare disease.<\/p>\n

How SLC6A1 Connect fundraises…<\/strong><\/p>\n

We fundraise constantly. We held 84 fundraisers last year including golf tournaments, dinners, media campaigns, and more.<\/p>\n

Amber\u2019s Dos and Don\u2019ts for running an effective organization…<\/strong><\/p>\n

Do be energetic and never give up hope. A lot of us are forced to be in this position. It\u2019s not a job we ever wanted or asked for. don\u2019t give in to the sorrow and depression. Try to focus on the future and the way things will be going forward.<\/p>\n

How Amber remains hopeful… <\/strong><\/p>\n

I remain hopeful by staying on it and being relentless. I put all my energy into pushing for a cure to this disease \u2013 80, 90 hours a week. I help every scientist we work with to advance their own individual projects, while also holding everyone accountable.<\/p>\n

How NORD has supported Amber\u2019s efforts…<\/strong><\/p>\n

NORD gave me all the tools I needed to begin my organization from the start. I was able to get a crash course in science through NORD\u2019s conferences and was equipped with tools to build a nonprofit and community.<\/p>\n

Where Amber developed her leadership skills…<\/strong><\/p>\n

I\u2019ve always been very involved in the community and giving back, but I never really strove to be president of an organization or anything like that. As a mother, I had to rise to the occasion when my son was diagnosed, but it worked out for the better to form a vision and work toward that goal.<\/p>\n

Amber\u2019s favorite quote… <\/strong>\u201cIf you\u2019re going to kill a cow, you better make a burger.\u201d To me that means that we\u2019re not just in this to come up with something small. We\u2019re looking at the big picture and we\u2019re making ourselves a burger.<\/p>\n

When Amber finds a cure for SLC6A1 and has to find a new mission, you\u2019ll find her…<\/strong>:<\/p>\n

Helping toward a cure for another rare disease. My dream is to never have another Freed family. I don\u2019t want another family to go through what we\u2019ve gone through, and I would like to provide some sort of blueprint as to how I went about this and help them be able to accomplish it themselves.<\/p>\n

The last book Amber read… <\/strong>The only reading I really do anymore is for research or when I\u2019m reading my twins a goodnight book. The last book I read was probably a textbook about 2 AM or Goodnight Moon.<\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Head of the Herd Spotlight, Amber Freed SLC6A1 Connect At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect. Amber advocates for… children living with the … <\/p>\n

Continue reading “Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12980,"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":[232,190,2147,192],"tags":[2447,2446,2445],"class_list":["post-59183","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-featured-news","category-head-of-the-herd","category-patients-members","tag-rare-neurological-condition","tag-slc6a1","tag-slc6a1-connect"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59183","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=59183"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59183\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12980"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59183"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}