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Annessia http://bos-foundation.org/bos-stories/2016/5/24/jacksons-story monthly 0.5 2016-05-24 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1464113851516-8DREL82RP1BIWOW6GRJB/image-asset.jpeg BOS Patient Stories - Jackson https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1464113875696-JKELVXOA321L2HY0OHEO/image-asset.jpeg BOS Patient Stories - Jackson http://bos-foundation.org/bos-stories/lennon monthly 0.5 2016-08-16 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1442973353798-J8S894Y00NJQ41Y36UMF/image-asset.png BOS Patient Stories - Lennon http://bos-foundation.org/bos-stories/hazel monthly 0.5 2016-05-24 http://bos-foundation.org/bos-stories/talynn monthly 0.5 2016-05-24 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1442973505389-38WM3P4H6WLKBD21M2WV/image-asset.png BOS Patient Stories - Talynn http://bos-foundation.org/bos-stories/tag/ASXL1 monthly 0.5 http://bos-foundation.org/bos-stories/tag/Bohring-Optiz+Syndrome monthly 0.5 http://bos-foundation.org/bos-stories/tag/BOS monthly 0.5 http://bos-foundation.org/bos-stories/tag/Special+Needs monthly 0.5 http://bos-foundation.org/bos-stories/tag/Talynn%27s+Journey monthly 0.5 http://bos-foundation.org/bos-stories/tag/Rare+Disease monthly 0.5 http://bos-foundation.org/blog daily 0.75 2025-11-02 http://bos-foundation.org/blog/2025/11/2/financial-scholarships-open-through-november-15 monthly 0.5 2025-11-02 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/533f9ac3-77d7-49e6-9ed1-e7b931f0d347/Financial+Scholarship+%281%29.png News - Financial Scholarships Open Through November 15 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2025/8/6/a-big-top-success-the-6th-bos-family-meet-up-brings-joy-connection-and-community-ggrl8 monthly 0.5 2025-08-07 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/8b51c2be-027b-4ed6-a904-8ff4a2a2ad3f/Untitled+design+%286%29.png News - A Big-Top Success! 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2025/2/26/2025-bos-annual-t-shirt-fundraiser-ends-friday-february-28 monthly 0.5 2025-02-26 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/6c562f61-f132-4336-8e6b-c577953f166b/unnamed.png News - 2025 BOS Annual T-shirt Fundraiser Ends Friday, February 28! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2024/12/21/bos-child-loss-support monthly 0.5 2024-12-21 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/b49b3d30-ef8d-42ef-b8e4-ea6d77d84ea9/In+Loving+Memory+BOS.jpg News - BOS Child Loss Support - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2024/11/29/giving-tuesday-campaign-support-families-living-with-bos monthly 0.5 2024-11-29 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/34511458-d916-4af3-b81c-e888c26dd35e/3rd+Annual+BOS+Ornament+Fundraiser.jpg News - Giving Tuesday Campaign: Support Families Living with BOS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2023/10/17/exciting-news-scholarship-applications-are-now-open monthly 0.5 2023-10-17 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/271a1de3-4df7-4ca6-aa1c-5684ec5ea493/Scholarship+Applications.png News - Exciting News... Scholarship Applications are now open! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2023/4/19/3rd-annual-golf-4-bos monthly 0.5 2023-04-21 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/ddd51247-907b-4cd2-88f6-7112774e8fbe/Screen+Shot+2023-04-21+at+6.16.25+PM.png News - 3rd Annual Golf 4 BOS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1682115452004-3GMC770TDATU1OSAGER8/IMG_7224.jpeg News - 3rd Annual Golf 4 BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1682115440419-7CZ7G4YBB3F8PB6YYHUM/Screen+Shot+2023-04-21+at+6.14.56+PM.png News - 3rd Annual Golf 4 BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1682115440987-64Y93YV8ELQ3451V0M7C/Screen+Shot+2023-04-21+at+6.15.14+PM.png News - 3rd Annual Golf 4 BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1682115535948-T18CWK6P40MUHHFLX06M/IMG_1262.jpeg News - 3rd Annual Golf 4 BOS http://bos-foundation.org/blog/2023/4/21/asxl-puberty-survey monthly 0.5 2023-04-21 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/e217180c-f0d2-4e6a-8e3f-89bf5d8cb862/Screen+Shot+2023-04-21+at+5.56.29+PM.png News - ASXL Puberty Survey - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2023/4/19/scholarship-applications-are-now-being-accepted monthly 0.5 2023-04-19 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/9e2fda93-b38f-406f-bffd-682f9bc41c32/BOS+SCholarships+%281%29.png News - Financial Scholarship Applications are now being accepted! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2022/3/24/2022-bos-financial-scholarship-application-open monthly 0.5 2022-04-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/49280c4d-89da-4577-861c-c4cf6b277c90/Screen+Shot+2022-03-24+at+8.02.04+PM.jpg News - 2022 BOS Financial Scholarship Application Open - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://bos-foundation.org/blog/2021/5/14/golf-4-bos monthly 0.5 2021-05-15 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1621045232468-IEHJXH9TYQJ51TV03YZU/IMG_2216.jpeg News - Golf 4 BOS Fundraiser https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1621045220862-7CFESK9T11X28GFIQ9EK/Screen+Shot+2021-05-14+at+2.33.02+PM.png News - Golf 4 BOS Fundraiser https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1621045238279-JOSQDHL54ADFE775R4X5/IMG_5657.jpeg News - Golf 4 BOS Fundraiser http://bos-foundation.org/blog/2021/3/1/bos-financial-scholarships-now-available monthly 0.5 2021-03-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1614641817488-DAOV6ED8L2ZKO99LNME4/FINANCIAL+SCHOLARSHIP.png News - BOS Financial Scholarships Now Available http://bos-foundation.org/blog/2020/9/18/bos-face-masks-are-here-and-bos-patients-get-1-free monthly 0.5 2021-02-02 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1600486159898-A8OH0CL0AI9YJ7KZRR4F/Stay%2Btuned...%2B%2BBOS%2BFace%2BMasks%2Bare%2Bcoming%2Bsoon%2521.jpg News - BOS face masks are here AND BOS Patients get 1 FREE! http://bos-foundation.org/blog/2020/5/14/asxl-registry-newsletter-2020 monthly 0.5 2020-05-14 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1589457017385-MMG5ZD1PQM76T8OR6X7D/ASXLRegistryNews2020b News - ASXL Registry Newsletter 2020 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1589457093080-5MACH8GZEKSO8YO7VLHK/ASXLRegistryNews2020b News - ASXL Registry Newsletter 2020 http://bos-foundation.org/blog/2020/5/14/rare-bears-are-back monthly 0.5 2020-05-14 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1589457686131-FY5WIIGG1C60K8YAGFDD/BOSrarebear+%2813%29.png News - Rare Bears are BACK! http://bos-foundation.org/blog/2020/2/2/annual-t-shirt-fundraiser monthly 0.5 2020-05-14 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1589461386323-OA8T6M76UJ0JESK403EG/BOSshirts.jpg News - Annual T-Shirt Fundraiser http://bos-foundation.org/blog/2020/2/1/5th-annual-bos-family-meet-up-on-july-25-2020-in-philadelphia monthly 0.5 2020-02-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1580593861475-RKI513XHOE38N8T51IMT/DIY+Guide+Blog+Banner.png News - Coming soon…5th Annual Meet-Up http://bos-foundation.org/blog/2019/7/2/4th-annual-bos-family-meet-up monthly 0.5 2019-07-11 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1562107109650-N0F2Y8KQZSX9B9PJGO8Y/2019+BOS+Family+Meet-Up+in+Philly%21+%281%29.png News - 4th Annual BOS Family Meet-Up http://bos-foundation.org/blog/2019/4/5/spreading-awareness-of-bohring-opitz-syndrome-ultra-rare-syndrome-celebrates-its-day-in-the-spotlight monthly 0.5 2019-04-05 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554495388992-1ACHX02TMH6LKQ6V1W8K/Screen+Shot+2019-04-05+at+4.14.52+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554495429535-QL5B8PIQ5VLOHMAXU1RK/Screen+Shot+2019-04-05+at+4.15.10+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554495454675-54UL1RYB6VUO7Y1NZ2FC/Screen+Shot+2019-04-05+at+4.15.17+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554495493870-AUZKDKT4905GND3RUJMB/Screen+Shot+2019-04-05+at+4.15.33+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554495518337-KQOKTYKABCJ1CR6HAS9A/Screen+Shot+2019-04-05+at+4.15.44+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554503919669-D8EQJBP2V30QOS8PS5H1/Screen+Shot+2019-04-05+at+6.36.47+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1554503919287-3NVXUTCXJPZXKH9WEGBB/Screen+Shot+2019-04-05+at+6.36.55+PM.png News - Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight http://bos-foundation.org/blog/2019/2/22/bos-foundation-funds-asxl1-research monthly 0.5 2019-02-23 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1550865285207-VZ269YT0RXG42J9GQ4PQ/Research.png News - BOS Foundation Funds ASXL1 Research http://bos-foundation.org/blog/2019/2/1/bos-foundation-launches-financial-scholarship-program-february-1-2019 monthly 0.5 2019-02-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1549053349989-8HVOM27KEUZCQJAE66O0/we+are+sharing+the+love+%281%29.png News - BOS Foundation Launches Financial Scholarship Program February 1, 2019 http://bos-foundation.org/blog/2018/11/26/monday-meet-the-board-lori-fulton monthly 0.5 2018-11-27 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1542681456643-ZY7BLSWT801LQ2ZYGYAM/Board+%282%29.png News - Monday Meet the Board- Lori Fulton http://bos-foundation.org/blog/2018/11/19/yankee-candle-amp-ornament-fundraisers monthly 0.5 2018-11-30 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1542682699664-YKDPQ4JRECP7OIX4E8YK/yankee.png News - Yankee Candle & Ornament Fundraisers https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1543613054397-VONLKLAQ1V9D3UJOPT5I/3rd+Annual+BOS+Ornament+Fundraiser+%282%29.png News - Yankee Candle & Ornament Fundraisers https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1542683176541-HHR653FYPTEAFJ0GH3YE/How+does+your+donation+help_.png News - Yankee Candle & Ornament Fundraisers http://bos-foundation.org/blog/2018/11/19/monday-meet-the-board-tony-nguyen monthly 0.5 2018-11-20 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1542681315932-2D7Q654WR0UPAFBY7F6Y/Board+%285%29.png News - Monday Meet the Board- Tony Nguyen http://bos-foundation.org/blog/2018/11/10/monday-meet-the-board-taylor-gurganus monthly 0.5 2018-11-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1541859730579-937U3352HKU7A9WQHUEE/Board+%283%29.png News - Monday Meet the Board- Taylor Gurganus http://bos-foundation.org/blog/2018/11/4/monday-meet-the-board-anita-ross monthly 0.5 2018-11-10 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1541343503666-FS2D3N3TD1O2S3ATXU75/Board.png News - Monday Meet the Board- Anita Ross http://bos-foundation.org/blog/2018/10/27/2019-bos-family-meet-up-back-in-philly monthly 0.5 2019-02-02 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1540678252352-VVMOL0WZ0VK4MBGZAF7B/2019+BOS+Family+Meet-Up+in+Philly%21.png News - 2019 BOS Family Meet-Up Back in Philly http://bos-foundation.org/blog/2018/8/12/3rd-annual-bos-family-meet-up monthly 0.5 2018-10-27 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534086990731-DBT4EEAIIFV0IUR0CSEO/image-asset.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087098269-4GRPQCT9TG31IOKOLQD6/KI5A0667.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087130840-282BIZ37XWD14EQA11BB/KI5A0645.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087098266-ASUMMLFIF2B9D8BTNM5V/KI5A1001+%281%29.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087281406-C3NDQ335G4TCBWIJZ1TF/KI5A0634.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087282260-Q4ML2MZ31JC8ZA2G1J2Q/KI5A0680.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087282375-ZWVPM4NI0E77DPHFD6WH/KI5A0716.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087283116-YTJ5X3932OFT0YQPRT1H/KI5A0727.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087891934-LL1A8FRL5NQ7WCAKG8WD/KI5A0893.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087283408-PAJNZM18L7EDOD7YG9PI/KI5A0805.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087284101-UZ2WXV2Z1AO9UJNNEWDB/KI5A0809.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087284351-QXTIQURB4SC8UGNNW5GD/KI5A1064+%281%29.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087285111-T99QND4VYDZROQU7296J/KI5A1093.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087285345-7MANKZTVF1CVP5IG0E5T/KI5A1127.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087424444-WP9QFEJ734PN6GSFAHIK/KI5A1241.jpeg News - 3rd Annual BOS Family Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1534087935623-A9769A40JDU2K7PHMD4Q/KI5A0504.jpeg News - 3rd Annual BOS Family Meet-Up http://bos-foundation.org/blog/2018/5/3/2018-bos-meet-up-travel-stipend-application monthly 0.5 2018-05-05 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1525402466582-G75TI9L3Q00C61WWFDB9/2018+BOS+Meet-Up+Travel+StipendsDeadline-+May+30%2C+2018+%282%29.png News - 2018 BOS Meet-Up Travel Stipend Application http://bos-foundation.org/blog/2018/5/3/inheritancepattern monthly 0.5 2018-05-04 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1525375284762-QD2UE7YTUPSHRLKD1OHK/Bohring-Opitz+Sndrome+-+No+longer+De+Novo+Mutation+%281%29.png News - Discussing the Inheritance Pattern for Bohring-Opitz Syndrome http://bos-foundation.org/blog/2018/4/28/bos-family-meet-up-2018 monthly 0.5 2018-04-29 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1524960409013-QDBKNAV37FEFDFOLQNGN/Save+the+Date.png News - BOS Family Meet-Up 2018 http://bos-foundation.org/blog/2018/3/17/celebrate-bos-awareness-day-in-your-community monthly 0.5 2018-03-20 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1521298418560-M3XYJVJZVPU7IEWQLM5R/image-asset.jpeg News - Celebrate BOS Awareness Day in Your Community! http://bos-foundation.org/blog/2017/10/12/family-finding-answers-after-57-year-search-for-a-diagnosis monthly 0.5 2017-10-31 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1507811418705-9WUATTTLJ3TN3A6V6UIN/Zimmerman.jpg News - Family Finding Answers After 57 Year Search for a Diagnosis Carl and Ann hold magazine with Jill and Vaughan's story https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1507851003632-ER7EKGCONTRK3XD5CFAV/gregory.jpg News - Family Finding Answers After 57 Year Search for a Diagnosis https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1508271673509-VAMJ2HZ1VON5W609FKUN/FullSizeRender+%286%29.jpg News - Family Finding Answers After 57 Year Search for a Diagnosis https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1508271723157-15RU7MIQ1OTYL7IO2I4F/FullSizeRender+%285%29.jpg News - Family Finding Answers After 57 Year Search for a Diagnosis http://bos-foundation.org/blog/2017/10/9/announcing-bos-foundation-international-mini-meet-up-grants monthly 0.5 2017-10-12 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1507599266456-0QBLVEQZT94GVAMQ6U9S/UKMeetUp.jpg News - Announcing International Mini Meet-Up Grants BOS families gathered for the first Family Meet-Up in the UK August 1, 2017 in Hatton Park http://bos-foundation.org/blog/2017/10/9/ss32qbg7upq5nbwupetgsj0fqhjeio monthly 0.5 2017-10-10 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1507597154851-89LS0AR3WK16HXWZO1UM/TonyGG.JPG News - BOS Foundation Board Member Attends Global Genes RARE Patient Advocacy Summit http://bos-foundation.org/blog/2017/9/9/information-about-our-birthday-club monthly 0.5 2017-09-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1504966017484-X429IZCBC8XH8ICIJLMB/BirthdayClub.png News - Information About Our Birthday Club http://bos-foundation.org/blog/2017/8/18/2nd-annual-bos-family-meet-up-in-philadelphia monthly 0.5 2017-08-19 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503091320681-I2KE0EBIFOO7YB6H8NYM/2017MeetUp.JPG News - 2nd Annual BOS Family Meet-Up in Philadelphia Fourteen families from all over the US attended the Meet-Up this year https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503091810579-EOPP2VA2USXGBWD0VI40/MeetUpPanel.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia Family/MAB Panel members introduced by Laura Badmaev, BOS Foundation Board Member https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092109752-Y94U58ZHX9T5G4ZP8NCL/20423885_1949888391895853_2790011204861311984_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092219731-FN8IGI51ZA68CNJJVWTA/20507216_1949887791895913_4836022742147163657_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092568949-AKHW2V5RFP99THPYQ04N/ZebraMeetUp.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092877521-RW6T4QY89J3ES6SLKG10/20449057_1949887638562595_3833627789111270515_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092900672-0TRH1C0TV3QBOA964N2Y/20374392_10214149807201447_7239086282172669228_n.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092929723-2GLA5GHHIV7ES5KQ05LZ/19054916_1949887775229248_8471955539724185144_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092957396-8GG9PJ4I8XTWJII7Y7UW/20449302_1949887658562593_1731942418526267302_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503092986293-AJQHFQT8XXMJNYRNJKY7/20375859_10214149813441603_477576846824195070_n.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093007195-P0F33FPOX4AWVUXJ44GU/20414259_1949888051895887_6475634409799149007_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093037869-5FRKIR63M0BQFRS5L3YF/20451624_1949888328562526_5056443273808056363_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093073015-CEBP7510T8BPI7TLCGJ0/20543744_1949887628562596_3959899222262570769_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093108806-9Z6UHF8ADZFZBX6Z29I4/20545367_1949888405229185_3645600623317690503_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093136636-4JFGXIPLFQJLKHO3AZJG/20448976_1949888198562539_2961038761112496072_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093166347-884JW6758MPP0PA8BQ4A/20479865_10214149813641608_4506284390113312492_n.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503093420580-P3P1LF8XI63A1XHD8Q7K/20424250_1949887571895935_2615833463826840742_o.jpg News - 2nd Annual BOS Family Meet-Up in Philadelphia http://bos-foundation.org/blog/2017/8/17/bos-asxl-related-disorders-registry monthly 0.5 2017-08-18 http://bos-foundation.org/blog/2017/8/3/we-are-bos-aware-jill-and-vaughan monthly 0.5 2017-08-04 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501812213372-UVYX8HOSYG18VGRDU84C/image-asset.jpeg News - We Are #BOS Aware: Jill and Vaughan https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501813183828-LY8OQ1P2AOWCNSPES3G5/image-asset.jpeg News - We Are #BOS Aware: Jill and Vaughan http://bos-foundation.org/blog/2017/8/3/taylor-article-untitled monthly 0.5 2017-08-04 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501811001556-E4XVAE11K1K7QXBD5TQA/image-asset.jpeg News - Spotlight on BOS Foundation Co-Founder, Taylor Gurganus Chad, Talynn, Tinlee & Taylor Gurganus https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501863170076-4XJVTOJ5F9KVXYW98FGR/image-asset.jpeg News - Spotlight on BOS Foundation Co-Founder, Taylor Gurganus https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501863316312-4ZD5KF3R66U1O8OKUQUE/bosinterview1.jpg News - Spotlight on BOS Foundation Co-Founder, Taylor Gurganus http://bos-foundation.org/blog/2017/7/27/gzoa4yolcj3i8sn00m33kcs2r5cwby monthly 0.5 2017-07-29 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501190994069-0JYLUN0P0VRFNXUVMSJQ/image-asset.jpeg News - Trinity Lutheran School in Orlando Raises Money for Bohring-Opitz Syndrome Hazel with her grandmother, Darlene and mom, Carrie shown here with students from Trinity Lutheran School holding sign showing they are #BOSAware. https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501191068469-MPNJWI84ZHW88YJ36XNT/image-asset.png News - Trinity Lutheran School in Orlando Raises Money for Bohring-Opitz Syndrome http://bos-foundation.org/blog/2017/7/27/fundraiser-for-vinny-boy-and-bos-foundation monthly 0.5 2017-07-27 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501172857640-4RC27662EFZYNJU2BRSH/image-asset.jpeg News - Fundraiser for Vinny Boy and BOS Foundation https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1501173137456-KOUKZ05N8MICA718QA7M/image-asset.jpeg News - Fundraiser for Vinny Boy and BOS Foundation http://bos-foundation.org/blog/2017/7/18/welcome-to-the-board monthly 0.5 2017-07-18 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1500391635323-MYJN4TOALMK80EXLNTD8/image-asset.png News - Welcome to the Board! http://bos-foundation.org/blog/2017/4/9/bohring-opitz-syndrome-foundation-2016-year-in-review monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491783378627-16YIZ2XKA7OMJZ15EMH3/image-asset.jpeg News - Bohring-Opitz Syndrome Foundation: 2016 Year in Review https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491955986638-G94KI0JEVSJV0C1M3ETX/image-asset.jpeg News - Bohring-Opitz Syndrome Foundation: 2016 Year in Review https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491957922703-XNG5QV7CZAH9TCYS62P3/image-asset.jpeg News - Bohring-Opitz Syndrome Foundation: 2016 Year in Review http://bos-foundation.org/blog/2017/4/10/cf9g4hllh2gegmsz4v3tm5f01gyavd monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491877179728-BOFF9UK9JO5I21XQERYF/image-asset.jpeg News - Bohring-Opitz Syndrome Highlighted at ACMG In March, the Bohring-Opitz Syndrome Foundation, Inc. made its debut at the American College of Medical Genetics and Genomes (ACMG) Annual Clinical Genetics Meeting in Phoenix, Arizona. The conference is considered the premiere educational and networking event in clinical genetics and genomics. Carrie Hunsucker, Co-Founder and Chair, attended the conference along with Sandy Dreis, Board Advisor. They joined Dr. Bianca Russell, member of the Medical Advisory Board (MAB), in representing Bohring-Opitz Syndrome. The Foundation sponsored a booth in the exhibition hall offering information on BOS, including the new Clinical Features document created under the direction of Dr. Russell and Dr. Wen-Hann Tan, also on the MAB. Carrie and Sandy met with several geneticists, and other professionals in the field, answering questions and engaging in discussions about BOS during the three-day conference. Bohring-Opitz Syndrome was highly visible and garnered a lot of interest thanks to Dr. Russell. In the opening session she presented as part of the Cardinal Signs of Six Selected Syndromes session. She spoke on “Bohring-Opitz: Not a Subtype of C Syndrome Anymore!” This follows the recent discovery of the gene that causes Opitz C Syndrome by researchers from the Group on Human Molecular Genetics of the University of Barcelona and the Biomedical Research Networking Center of Rare Diseases (CIBERER). Dr. Russell also presented a poster on “Bohring-Opitz Syndrome Patient Support Group an Essential Element for Optimizing Facial Dysmorphism Recognition Software Tool.” This was a project with the Face2Gene software tool educating and encouraging parents in the BOS support group to enter their child’s picture into the software tool to increase the likelihood for more accurate diagnoses. Face2Gene is a tool that facilitates comprehensive and precise genetic evaluation through the use of an app that detects phenotypes and reveals relevant facial and non-facial features for genetic syndromes. We would like to thank the Facebook Group and the Bohring-Opitz worldwide exchange for their hard work in this project. Carrie and Sandy both commented on how exciting it was to see so much attention surrounding Bohring-Opitz Syndrome. During Dr. Russell’s opening session, the moderator asked how many in the audience had experience with BOS. Approximately twenty attendees raised their hands showing the growing awareness of the ultra-rare syndrome among the medical community. There was a lot of buzz generated around BOS during the conference due to Dr. Russell’s talks and poster. It was promising to hear many geneticists mention they had cases at home where they would now consider BOS as a diagnosis. It was an invaluable experience for the Foundation to network with others in the industry including diagnostic companies and other rare syndrome foundations. “The discussion and learning around BOS created excitement for the attendees. Their enthusiasm led to hopefulness on our part that more and more children and families will receive the answers they need and deserve.” said Sandy. Carrie mentioned one of the important takeaways from the week is the need to raise awareness among geneticists that they can test for a custom panel if they suspect BOS. She was also able to confirm the ASXL1, 2, and 3 mutations were on the panels at the attending diagnostic companies. Networking with successful rare syndrome foundations was also beneficial to form future mentorships to grow the BOS Foundation. Having a strong community of parent and family advocates is key to success in any patient run organization. “I think it’s important for geneticists and researchers to see what an engaged and motivated group of parents and families are behind them,” noted Carrie. A highlight from the week was a fellow geneticist approaching Dr. Russell about including pictures and description on BOS in an up-coming book on genetics in the newborn period. This is an exciting step to further the education of those in the medical community to ensure earlier diagnosis of BOS. The Foundation would like to thank Dr. Bianca Russell for her hard work and dedication to the BOS community. http://bos-foundation.org/blog/2017/4/3/awareness-day-is-april-6th-what-can-i-do monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491270091377-0AYBPQ2057MJ2HD5EKGQ/image-asset.png News - Awareness Day Is April 6th: What Can I Do? http://bos-foundation.org/blog/2017/4/3/ultra-rare-syndrome-celebrates-its-day-in-the-spotlight-april-6 monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491274481256-30RXFPY1MRJ4I97C5XYU/image-asset.png News - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491274545851-3F5YS89I6AI75TS1RCYM/image-asset.png News - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491274968086-QKZH1I8A9ZAAG1VLE0D5/image-asset.png News - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491275217706-PXNL1DHAPSYN6W9M61OW/image-asset.png News - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491275977958-EGGMZYMDTF08P4V3YXBK/image-asset.png News - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight http://bos-foundation.org/blog/2017/4/2/bos-parent-advocates-participate-in-rare-disease-events monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491148852719-DHL4K5U5QMRLALHQTMHW/image-asset.jpeg News - BOS Advocates Participate in Rare Disease Events https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1491153726906-W4GFLSHWKV65G6P7C7VS/image-asset.jpeg News - BOS Advocates Participate in Rare Disease Events http://bos-foundation.org/blog/2017/3/30/2017-bos-coloring-page monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1490898773259-INX7IJ62SVOZK7I1BH3U/image-asset.jpeg News - 2017 BOS Coloring Page http://bos-foundation.org/blog/2017/3/28/bos-foundation-welcomes-new-medical-advisory-board-members monthly 0.5 2017-03-28 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1490676629467-HUTMDTA0NXB00UOBZ029/image-asset.png News - BOS Foundation Medical Advisory Board Welcomes Dr. Yang and Dr. Pierson http://bos-foundation.org/blog/2017/2/27/rare-disease-day-2017 monthly 0.5 2017-02-28 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1488253618334-GCA8PQTQZV302Z5N7SSA/image-asset.png News - Rare Disease Day 2017 http://bos-foundation.org/blog/2017/2/16/bos-foundation-partners-with-rare-science-for-awareness-day monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1487290997626-OQP703O1TD075QEUDJAM/image-asset.png News - BOS Foundation Partners with RARE Science for Awareness Day Talynn, Lennon, Campbell and Hazel with their one-of-a-kind Rare Bears, including a few with their BOS birthday club cape http://bos-foundation.org/blog/2017/2/2/we-are-partnering-with-the-mighty monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486061315385-JXJ4VW0HGO0W7PAKG783/image-asset.png News - We're Partnering with The Mighty! http://bos-foundation.org/blog/2017/2/2/child-with-bos-featured-in-beyond-the-diagnosis-project monthly 0.5 2017-02-02 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486053242610-I9RH3OM2FTF7JDBA3HE2/TalynnPotrait News - Child with BOS Featured in Beyond the Diagnosis Exhibit http://bos-foundation.org/blog/2017/1/31/bohring-opitz-syndrome-receives-international-attention-through-video monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485891708028-NS0BNJYCTEO1NIAUOJCC/HazelMrChris.jpg News - Bohring-Opitz Syndrome Receives International Attention Hazel and Mr. Chris shared an amazing bond http://bos-foundation.org/blog/2017/1/14/position-opening-director-of-fundraising monthly 0.5 2017-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1484441833813-NRUFPT28ANCD47J48A4H/Screen+Shot+2017-01-11+at+7.07.31+PM.png News - Position Opening - Director of Fundraising https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1484441964281-6OEXXVXB20QBJLOOCR1K/image-asset.png News - Position Opening - Director of Fundraising http://bos-foundation.org/blog/2017/1/11/bos-awareness-day monthly 0.5 2017-01-11 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1484150919132-EXFWMS9NESTWM844WR9S/image-asset.png News - BOS Awareness Day http://bos-foundation.org/blog/2016/11/29/the-hunsuckers-met-mice-that-have-bos monthly 0.5 2016-11-29 http://bos-foundation.org/blog/2016/11/25/bos-holiday-ornaments-1 monthly 0.5 2016-11-26 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1480130691024-KYZO2RIMOAIX2JCUOOMB/image-asset.png News - BOS Holiday Ornament http://bos-foundation.org/blog/2016/11/16/join-our-birthday-club monthly 0.5 2017-04-10 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1479338241302-TXBD2YG274QNSYPLNOSH/BOS+Foundation.jpg News - Join Our Birthday Club http://bos-foundation.org/blog/2016/10/2/ask-the-bos-experts monthly 0.5 2016-10-03 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1475458673951-F5LFXO1HXIUWXPFWQ95Q/image-asset.png News - Ask the BOS Experts http://bos-foundation.org/blog/2016/8/16/amazon-smile monthly 0.5 2016-09-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1473418940355-WBIR2JVEJAJUCD0Y23X1/image-asset.jpeg News - Amazon Smile http://bos-foundation.org/blog/2016/7/26/introducing-the-latest-three-members-of-our-medical-advisory-board monthly 0.5 2016-07-27 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1469559401673-MAX1H4PAPZ7MHLJ102QK/image-asset.jpeg News - Introducing the latest three members of our Medical Advisory Board! http://bos-foundation.org/blog/2016/4/5/why-should-you-raise-awareness monthly 0.5 2016-04-06 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1459913238682-3F42R56D6AA2OOWG10MV/image-asset.jpeg News - Why should you raise awareness? http://bos-foundation.org/blog/2016/3/31/bos-coloring-page monthly 0.5 2016-04-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1459480946407-C2AEXYWF2FT6GFBKHZ96/image-asset.jpeg News - BOS Coloring Page http://bos-foundation.org/blog/2016/3/14/cq0x9ckv9cn3fy7nzkuztgwyzkqmb4 monthly 0.5 2016-03-15 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1458011615149-3YVTUNC5X04G6YM1Z6HJ/image-asset.jpeg News - We need YOU! Please email the BOS Foundation at bohringopitz@gmail.com if you would like to give a speech on BOS! http://bos-foundation.org/blog/2016/1/23/welcome-dr-young monthly 0.5 2016-01-23 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1453561082550-LJTDZIF8PG66FV8KISRP/image-asset.png News - Welcome Dr. Young! http://bos-foundation.org/blog/2015/12/24/happy-holidays monthly 0.5 2015-12-24 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1450981304056-RXW62QICER7JJ4817014/image-asset.jpeg News - Happy Holidays http://bos-foundation.org/blog/2015/12/17/2015-is-coming-to-an-end monthly 0.5 2015-12-17 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1450384963435-218L0JPYPMVX64B2RD6Z/image-asset.jpeg News - 2015 is coming to an end... http://bos-foundation.org/blog/2015/12/9/welcome-dr-wen-hann-tan monthly 0.5 2015-12-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1449701154955-PVGOUHDKOAO6YC4Q35ZA/image-asset.jpeg News - Welcome Dr. Wen-Hann Tan http://bos-foundation.org/blog/2015/11/9/raising-awareness-by-public-speaking monthly 0.5 2015-11-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1447078389802-KIICRTYQT6PM9ATHX9GW/image-asset.jpeg News - Raising awareness by public speaking! http://bos-foundation.org/blog/2015/10/10/our-exciting-discovery monthly 0.5 2015-10-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444661839973-DYHJZUDH1P8TNT5R6TB8/There%27s+exciting+new+research+for+the+BOS+community%21.jpg News - Our exciting discovery! http://bos-foundation.org/blog/2015/10/11/choc-walk-2015 monthly 0.5 2015-10-11 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444605634747-4O4DJXMYT109LH6N3WO7/image-asset.png News - CHOC Walk 2015 - Spreading Awareness http://bos-foundation.org/blog/2015/10/10/stay-tuned-1 monthly 0.5 2015-10-11 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444524827979-B2NIGDA7DKHSNQ16UVWT/image-asset.png News - Stay Tuned... http://bos-foundation.org/blog/2015/10/10/introducing-the-mab monthly 0.5 2015-10-11 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444508748825-734YR6FGX69BVPWNYXAB/image-asset.png News - Introducing the MAB & MAC! http://bos-foundation.org/blog/2015/10/9/great-news monthly 0.5 2015-10-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444420854476-811LUJO0CWJ1W1WRAQID/image-asset.jpeg News - GREAT NEWS! http://bos-foundation.org/blog/2015/10/9/join-us monthly 0.5 2015-10-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444420787398-S6LKD5WAYS80950CP6RX/image-asset.png News - Join us! http://bos-foundation.org/blog/2015/10/9/recently-diagnosed monthly 0.5 2015-10-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444420670308-GNZ7HE1M0CYG1BCPZCNQ/image-asset.png News - Recently Diagnosed? http://bos-foundation.org/blog/2015/10/9/we-have-raised-enough-funds monthly 0.5 2015-10-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444420598736-1X9YW22L53PXNVR0UL6E/image-asset.png News - We have raised enough funds! http://bos-foundation.org/blog/2015/10/9/announcing-the-first-bohring-opitz-syndrome-foundation monthly 0.5 2015-10-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1444420396827-OM2I7CGJCSIXO3IKP4F4/image-asset.jpeg News - Announcing the first Bohring-Opitz Syndrome Foundation http://bos-foundation.org/blog/category/Advocacy monthly 0.5 http://bos-foundation.org/blog/category/December+News monthly 0.5 http://bos-foundation.org/blog/category/Bohring-Opitz+Syndrome monthly 0.5 http://bos-foundation.org/blog/category/September+News monthly 0.5 http://bos-foundation.org/blog/category/October+News monthly 0.5 http://bos-foundation.org/blog/category/July+News+2016 monthly 0.5 http://bos-foundation.org/blog/category/January+2016 monthly 0.5 http://bos-foundation.org/blog/category/Rare+Disease monthly 0.5 http://bos-foundation.org/blog/tag/Patient+Registry monthly 0.5 http://bos-foundation.org/blog/tag/Medical+Advisory+Board monthly 0.5 http://bos-foundation.org/blog/tag/Patient+Support monthly 0.5 http://bos-foundation.org/blog/tag/BOS monthly 0.5 http://bos-foundation.org/blog/tag/Bohring-Opitz+Syndrome monthly 0.5 http://bos-foundation.org/blog/tag/Registry monthly 0.5 http://bos-foundation.org/blog/tag/BOS+Family+Meet-Up monthly 0.5 http://bos-foundation.org/blog/tag/Speaking monthly 0.5 http://bos-foundation.org/blog/tag/Get+Involved monthly 0.5 http://bos-foundation.org/blog/tag/Special+Needs monthly 0.5 http://bos-foundation.org/blog/tag/Raise+Awareness monthly 0.5 http://bos-foundation.org/blog/tag/BOS+Clinical+Features monthly 0.5 http://bos-foundation.org/blog/tag/Rare+Disease monthly 0.5 http://bos-foundation.org/blog/tag/Meet-up monthly 0.5 http://bos-foundation.org/annual-meetup-1 daily 0.75 2025-08-07 http://bos-foundation.org/annual-meetup-1/2025/8/6/a-big-top-success-the-6th-bos-family-meet-up-brings-joy-connection-and-community monthly 0.5 2025-08-07 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/8b51c2be-027b-4ed6-a904-8ff4a2a2ad3f/Untitled+design+%286%29.png Annual Meet-Up - 2025-The 6th BOS Family Meet-Up Brings Joy, Connection, and Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1754527900510-M5RDTA1JE7B84SO1DUXY/DSCF7524+%281%29.JPG Annual Meet-Up - 2025-The 6th BOS Family Meet-Up Brings Joy, Connection, and Community - DSCF7524 (1).JPG https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1754527904908-RMSWZ2S2ZCM58YFP62ZI/DSCF7534.JPG Annual Meet-Up - 2025-The 6th BOS Family Meet-Up Brings Joy, Connection, and Community - DSCF7534.JPG https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1754527925433-QLBPKSJG821ZDLWEG0BV/DSCF7544.JPG Annual Meet-Up - 2025-The 6th BOS Family Meet-Up Brings Joy, Connection, and Community - DSCF7544.JPG https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1754527925653-4U54SJ0Z60F2B20MKU97/DSCF7548.JPG Annual Meet-Up - 2025-The 6th BOS Family Meet-Up Brings Joy, Connection, and Community - 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Beautiful Artwork Influenced by BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555168633904-SRIDJWILZI46PO5U48FC/tgetty_a+wrinkle.jpg Awareness Initiatives - Beautiful Artwork Influenced by BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555168633309-1PSNQ22W5YHYH70V7OOF/tgetty_babblingattowerbase.jpg Awareness Initiatives - Beautiful Artwork Influenced by BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555168639598-NKI9ZN8H56S5KUIHTV53/tgetty_ifitwerentforthefish.jpg Awareness Initiatives - Beautiful Artwork Influenced by BOS https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555168637958-XBB6072VE5PNQ9GUAW1V/tgetty_throughtheneedle.jpg Awareness Initiatives - Beautiful Artwork Influenced by BOS http://bos-foundation.org/awareness1/2019/4/13/over-15000-raised monthly 0.5 2019-04-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555161878454-XGMLVVJZQ0LHRXYR4K6A/image1+%282%29.jpeg Awareness Initiatives - Over $15,000 Raised! https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555161878485-8UGRCJU5FADVS7PHGN45/image2+%281%29.jpeg Awareness Initiatives - Over $15,000 Raised! https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555161878930-75GV9WTXTGKOY9BUIFFT/image3.jpeg Awareness Initiatives - Over $15,000 Raised! https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1555161882838-7V7BESYE1JRNEATRA5PG/image4.jpeg Awareness Initiatives - Over $15,000 Raised! http://bos-foundation.org/fundraising daily 0.75 2018-01-29 http://bos-foundation.org/medical daily 0.75 2018-01-18 http://bos-foundation.org/home-old daily 0.75 2017-08-05 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486493198953-BNGNLDGYW42MFGBNLJPB/bowiew.jpg Home https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486493145349-7MMICHR9DKSR8WC1Z7PS/talynn.png Home http://bos-foundation.org/contact daily 0.75 2016-07-27 http://bos-foundation.org/boardmembers daily 0.75 2018-02-23 http://bos-foundation.org/what-we-do daily 0.75 2017-06-15 http://bos-foundation.org/get-involved daily 0.75 2018-01-29 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1489169832515-XJL8J0WPWJZQX0LPOVCK/20141023_135754.jpeg Get Involved https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1489169862017-7J8XU1NZK7DFS3JWKHZJ/409423_3102290835883_243920213_n.jpg Get Involved http://bos-foundation.org/parental-support daily 0.75 2017-07-31 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486491014353-L5JGNI8DT9GEXOBCF1B5/lennon.png Patient Support Committee https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486491069637-DK2B6S06P19PI6DNSPNB/IMG_2043+%281%29.jpeg Patient Support Committee https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1478801926013-0GU5HFBZ2EGB2JV95OAN/image-asset.png Patient Support Committee The BOS Connection group was created for knowledge, collaboration, medical research, and public awareness of Bohring-Opitz Syndrome. This group shares various information about the BOS Foundation and how you can share your story and photos on our social media sites. http://bos-foundation.org/make-a-donation daily 0.75 2019-03-01 http://bos-foundation.org/consentform daily 0.75 2018-04-17 http://bos-foundation.org/bos daily 0.75 2017-02-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486490564224-KFHXJAUUYNHTYPDKORN0/hazel.png What is BOS? https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1486490569999-BPCDYC7J54MMAWSP8M9Y/gavin.png What is BOS? http://bos-foundation.org/awareness-products-request daily 0.75 2021-02-13 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1521557125915-PZ9FSTAFWJ7RZ8GN0RJ5/IMG_3363.jpg Request Awareness Products https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1521557072346-1IMH0XVW525F4S0DJPVL/IMG_3363.jpg Request Awareness Products http://bos-foundation.org/medical-articles daily 0.75 2018-03-07 http://bos-foundation.org/bos-awareness-day daily 0.75 2021-03-28 http://bos-foundation.org/key-features daily 0.75 2017-04-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1490899503391-2C1X3P56D5Q7QFP3S5E5/Screen+Shot+2017-03-30+at+2.39.53+PM.png Clinical Features -       http://bos-foundation.org/registry-faqs daily 0.75 2016-03-29 http://bos-foundation.org/new-to-bos daily 0.75 2025-08-01 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1481831618681-ACMAEX59VVE12K8ZQD2I/image2.JPG New to BOS http://bos-foundation.org/parent-mentorship daily 0.75 2017-05-25 http://bos-foundation.org/faqs daily 0.75 2016-09-17 http://bos-foundation.org/birthday daily 0.75 2018-01-09 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1504967818238-2TRSL16TFDNY2Y7C6FD2/BirthdayClub+%281%29.png Birthday Club https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1504967852604-7L7YI1XWT3KA6AC2CR6Y/rare2.jpg Birthday Club - Request your Rare Bear here! We are excited to announce we have partnered with RARE Science to gift BOS children and angels with one-of-a-kind RARE Bears. RARE Science initiated the RARE Bear program in August of 2015. It has since grown to include over 700 RARE Bear Makers from around the world (they span 9 countries and 45 states in the US) that make up the RARE Bear Army.   http://bos-foundation.org/newsletter-signup daily 0.75 2016-10-08 http://bos-foundation.org/partnerships daily 0.75 2017-01-31 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485906882508-DNMGTTJY08QHMUKBU2SQ/Screen+Shot+2017-01-31+at+6.54.21+PM.png Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485906926062-Z3AMU1G35K3HO6OVBJ4R/image-asset.png Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485905797778-IWUO44KWMDTY8L981EJD/Screen+Shot+2017-01-31+at+6.35.07+PM.png Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485907038403-G1CTMF5FXMRG9NUEMY3V/image-asset.png Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1481828462908-QBNFM20D7A11ZRVZNKM3/image-asset.jpeg Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1478023390219-X5A8JFQKX7GA4ZDLS5IJ/RDR+logo.png Our Partnerships https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1485905744537-NB4E92ITBZI5D3BB2ZMG/Screen+Shot+2017-01-12+at+12.02.00+PM.png Our Partnerships http://bos-foundation.org/bosblog daily 0.75 2016-12-16 http://bos-foundation.org/bos-meetup daily 0.75 2025-08-07 https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503115390303-7M6DOI8MZW9KND6DHGTH/DSC_3512.jpg BOS Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1503115506804-BBYGQGDZ3PA6QNLTWZ17/2+%281%29.jpg BOS Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1566326268690-3SBE5L92WYTMCILIRYX5/38.jpg BOS Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1566326205776-JAKYR8IRUN4MJFGHFPM8/families.jpeg BOS Meet-Up https://images.squarespace-cdn.com/content/v1/55dfb687e4b0eeba87716bc0/1741200956928-YZOCBXVVMD2IGA1DBUIM/C56707FF-CF0E-458D-9E64-3077060038DA-1837-000001987C1C125B.jpg BOS Meet-Up - 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