{"id":59101,"date":"2020-02-14T14:05:47","date_gmt":"2020-02-14T19:05:47","guid":{"rendered":"https:\/\/rarediseases.org\/head-of-the-herd-bonnie-royster-cdls-foundation\/"},"modified":"2020-02-14T14:05:47","modified_gmt":"2020-02-14T19:05:47","slug":"head-of-the-herd-bonnie-royster-cdls-foundation","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/head-of-the-herd-bonnie-royster-cdls-foundation\/","title":{"rendered":"Head of the Herd: Bonnie Royster, CdLS Foundation"},"content":{"rendered":"

At the head of the herd is\u2026<\/b> Bonnie Royster, Executive Director, <\/span>Cornelia de Lange Syndrome (CdLS) Foundation<\/span><\/a><\/p>\n

Bonnie most frequently checks her\u2026<\/b> Facebook<\/a>\u00a0<\/span><\/p>\n

Bonnie advocates for those living with\u2026 <\/b>Cornelia de Lange syndrome, or \u201cCdLS\u201d<\/span><\/p>\n

Bonnie is located in\u2026 <\/b>Avon, CT<\/span><\/p>\n

How Bonnie got here\u2026<\/b><\/p>\n

I have a corporate background in operations…but my heart has always been grounded in helping people. My work at United Way prepared me well. It took a bit of time to understand the profoundness of CdLS and its impact on families. I\u2019m all in now! I love using my skill and expertise in a way that is meaningful to our families \u2013 raising awareness and being the chief executive advocate for them.<\/span><\/p>\n

What\u2019s happening at CdLS Foundation\u2026\u00a0<\/b><\/p>\n

Our mission has evolved. Initially it was to help with the CdLS diagnosis. Over time we have built a vibrant community of researchers, clinicians, volunteers, and parent experts who are helping us better manage the complications of living with CdLS. Today, our approach is more holistic and includes self-care and tending to the care of the other family members who also live with the challenges CdLS poses. We have 6 gatherings a year where we fly out to different regions to meet with families. We also hold 3-4 clinics a year, webinars, and field phone calls from across the country. We are also beginning to branch out to include other similar rare diseases. See our website for more:<\/span> https:\/\/www.cdlsusa.org\/<\/span><\/a><\/p>\n

The plan for 2020\u2026<\/b><\/p>\n

We have our biannual conference, and this year we hope to create a conference that will give people medical updates, but also provide comfort to each other. We are thinking more broadly about healing and want to teach self-care as a part of the overall care for their child with the CdLS syndrome. Our goal is to treat this more holistically.\u00a0<\/span><\/p>\n

What\u2019s working now\u2026<\/b><\/p>\n

Our fundraising is very events-based. We hold \u201cTeam CdLS\u201d events, such as walks, races, and biking. We also hold golf tournaments and use the Facebook\/social media fundraising capabilities. It is a way for people to engage with us, each other, and give back. It goes beyond raising money.\u00a0<\/span><\/p>\n

Bonnie\u2019s lessons for other leaders\u2026<\/b><\/p>\n

Always act as a leader, even outside of your role. Lead from the heart more. It is also so important to build empathy. It is the driving force for me.<\/span>\u00a0<\/b><\/p>\n

Bonnie\u2019s outlook\u2026<\/b><\/p>\n

The international conferences give me hope, because I see these top professionals around the world unite together to make life easier for our patients and families. Also, continuing research keeps me hopeful. Although we don\u2019t yet have a cure, we understand CdLS so much better than we used to, and we have <\/span>international treatment<\/i><\/b> guidelines.<\/i><\/b>\u00a0<\/span><\/p>\n

Bonnie\u2019s most recently used NORD service\u2026 <\/b>NORD\u2019s <\/span>Rare Action Network<\/span><\/a> and the <\/span>State Report Card<\/span><\/a>.<\/span><\/p>\n

Lessons learned… <\/b>I learned early on that leadership is not about that title, but about how and who you are as a person.\u00a0<\/span><\/p>\n

Bonnie wants you to read\u2026 <\/b>Love is Just Damn Good Business <\/span><\/i>by Steve Farber and <\/span>The Art of Gathering <\/span><\/i>by Priya Parker\u00a0<\/span><\/p>\n

Bonnie would rather be\u2026 <\/b>singing.\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

At the head of the herd is\u2026 Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation Bonnie most frequently checks her\u2026 Facebook\u00a0 Bonnie advocates for those living with\u2026 Cornelia … <\/p>\n

Continue reading “Head of the Herd: Bonnie Royster, CdLS Foundation”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12836,"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":[2183,620,616,2182],"class_list":["post-59101","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-bonnie-royster","tag-cdls","tag-cornelia-de-lange-syndrome","tag-cornelia-de-lange-syndrome-foundation"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59101","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=59101"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59101\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12836"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59101"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59101"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59101"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}