La dott. ssa Gordon ha aperto la strada alla scoperta di trattamenti e cure per le persone affette da Progeria. \u00c8 stata co-autrice della scoperta genetica del 2003 per la Progeria in Natura<\/em>, autore principale dello studio del 2012 sulla scoperta del trattamento della Progeria in Rivista dell'Associazione Medica Americana (JAMA). <\/em>Ha co-presieduto quattro Sperimentazioni cliniche sui farmaci per la progeria<\/a> per i bambini affetti da Progeria presso il Boston Children's Hospital.<\/p>\n La Dott.ssa Gordon ha conseguito la laurea triennale presso l'Universit\u00e0 del New Hampshire e il master, la laurea in medicina e il dottorato di ricerca presso la Brown University.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=\u201dScott D. Berns, MD, MPH, FAAP\u201d position=\u201dPresidente, Consiglio di amministrazione\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Scott-Berns.jpg\u201d admin_label=\u201dScott D. Berns, MD, MPH, FAAP\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.21.0\u2033 position_font=\u201d|700||||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n Dopo aver prestato servizio per 14 anni presso l'ufficio nazionale di March of Dimes, dove \u00e8 stato vicepresidente senior dei programmi dei capitoli e vicedirettore dell'ufficio medico, nell'ottobre 2015 il dott. Berns \u00e8 diventato presidente e amministratore delegato del NICHQ (National Institute for Children's Health Quality), un'organizzazione indipendente e senza scopo di lucro che si impegna per migliorare la salute dei bambini.<\/p>\n Scott \u00e8 un pediatra certificato e un medico pediatrico d'urgenza. \u00c8 professore clinico di pediatria presso la Warren Alpert Medical School della Brown University e professore clinico di servizi sanitari, politica e pratica presso la Brown School of Public Health di Providence, Rhode Island. Ha conseguito un master in salute pubblica presso la Harvard School of Public Health con specializzazione in salute, politica e gestione e ha completato una borsa di studio di un anno alla Casa Bianca, dove ha ricoperto il ruolo di assistente speciale del Segretario dei trasporti degli Stati Uniti.<\/p>\n Scott ha ricevuto il Willis Wingert Award per l'eccellenza nella ricerca in medicina d'urgenza pediatrica dall'American Academy of Pediatrics, un premio nazionale dalla National Perinatal Association, un premio per il servizio di sanit\u00e0 pubblica dal Dipartimento dei trasporti degli Stati Uniti e l'Impact Award 2015 dalla White House Fellows Foundation & Association.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=”Carlos” position=”PRF Ambassador” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/03\/Carlos-WhatsApp-from-Tatiana-3-12-25.jpeg” admin_label=”Carlos” module_class=”prf-person-module” _builder_version=”4.27.4″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n Carlos \u00e8 l'ambasciatore dei giovani della PRF, condividendo la prospettiva unica del suo percorso con la Progeria attraverso varie opportunit\u00e0 mediatiche. Diagnosticato con la Progeria all'et\u00e0 di 4 anni, <\/span>ha sempre avuto una predilezione per i giocattoli che implicavano la costruzione e l'edilizia. <\/span>Carlos \u00e8 famoso per essere incredibilmente gentile e intelligente, e per mettere sempre un sorriso sul volto delle persone con il suo calore e il suo umorismo. Oggi \u00e8 al 9\u00b0 anno, dove le sue materie preferite sono Scienze e Storia, e ha in programma di laurearsi in Scienze o Giurisprudenza. Carlos ha sempre avuto una personalit\u00e0 molto audace e forte, lavorando sodo in tutto ci\u00f2 che si prefigge e non rinunciando mai ai suoi sogni.<\/span><\/p>\n [\/et_pb_team_member][et_pb_team_member name=”In Memory of PRF Ambassador and Progeria Researcher, Sammy Basso” image_url=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2021\/08\/Sammybasso-headshot.jpg” admin_label=”In Memory of Sammy Basso” module_class=”prf-person-module” _builder_version=”4.27.2″ position_font=”|700|||||||” position_text_color=”#00B2E2″ custom_margin=”||45px” global_colors_info=”{}”]<\/p>\n Sammy Basso era conosciuto e adorato in tutto il mondo come portavoce della PRF e della comunit\u00e0 Progeria. \u00c8 scomparso nell'ottobre 2024 all'et\u00e0 di 28 anni, la persona pi\u00f9 anziana conosciuta ad aver mai vissuto con la Progeria classica.<\/p>\n Nato nel 1995, a Sammy \u00e8 stata diagnosticata la Progeria all'et\u00e0 di due anni, e da quando aveva dieci anni \u00e8 stato portavoce della Sammy Basso Italian Association for Progeria. Nel 2007, Sammy \u00e8 stato tra i primi a partecipare alle sperimentazioni cliniche della PRF, testando il farmaco lonafarnib, ora approvato dalla FDA, come primo trattamento in assoluto per la Progeria. Nel 2014, \u00e8 apparso nel docu-film del National Geographic "Il Viaggio di Sammy", che raccontava il suo viaggio da sogno: viaggiare sulla Route 66 negli Stati Uniti da Chicago a Los Angeles con i suoi genitori e un amico.<\/u><\/u><\/p>\n Nel 2018, Sammy si \u00e8 laureato in Scienze Naturali presso l'Universit\u00e0 di Padova e ha presentato una tesi su un approccio di editing genetico nei topi HGPS. Pi\u00f9 tardi, nello stesso anno, \u00e8 stato insignito dell'onorificenza di Cavaliere dell'Ordine al Merito della Repubblica Italiana, per la sua approfondita ricerca sulle disabilit\u00e0 e la sua collaborazione con il governo italiano. Nel 2020, Sammy \u00e8 diventato membro della task force regionale e nazionale del Veneto per la divulgazione delle informazioni sul COVID-19 (caratteristiche scientifiche e di influencer). Nel 2021, Sammy si \u00e8 laureato con una seconda laurea in Biologia Molecolare con una tesi sull'intersezione di Lamina A e Interleuchina-6, un approccio per il trattamento della Progeria prendendo di mira la proteina tossica, nota come progerina. <\/u><\/u><\/u><\/u>Ascolta Sammy in un panel allo STAT Breakthrough Science Summit del 2021 Qui<\/a>.\u200b<\/p>\n Facciamo tesoro dei ricordi della straordinaria gioia di vivere di Sammy, del suo ottimismo, della sua gentilezza e della sua genialit\u00e0 mentre continuiamo a fare ci\u00f2 che lui vorrebbe che facessimo: continuare la nostra lotta per trovare una cura.<\/p>\n [\/et_pb_team_member][et_pb_team_member name=\u201dIn memoria di John Tacket, il primo ambasciatore giovanile della PRF\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/john.jpg\u201d admin_label=\u201dIn memoria di John Tacket\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.16\u2033 custom_margin=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n Il sedicenne John Tacket, primo ambasciatore dei giovani della PRF, \u00e8 mancato mercoled\u00ec 3 marzo 2004. John era una persona incredibile che non si \u00e8 mai lasciato rallentare dalla sua condizione. Tra le sue attivit\u00e0 scolastiche, il lavoro e la passione per la batteria, ha accolto con favore il fatto di parlare con gli altri, soprattutto con i bambini, della Progeria perch\u00e9 riteneva importante che le persone ne fossero informate. John \u00e8 stato un membro chiave del panel che ha annunciato la scoperta del gene della Progeria nell'aprile 2003 a Washington, DC. Ha risposto alle domande dei giornalisti e ha commentato che \u00e8 stato un momento emozionante per lui e i suoi amici. Siamo orgogliosi di aver conosciuto John e la PRF gli sar\u00e0 per sempre grata per il suo contributo nel sensibilizzare sulla Progeria e sul lavoro della PRF. \u00c8 stato un'ispirazione per tutti noi. John ci mancher\u00e0 moltissimo.<\/p>\n Clicca qui per vedere un'intervista a John, scattata quando aveva 13 anni.<\/a><\/p>\n [\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 module_class=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d-2px|||||\u201d custom_padding=\u201d0|0px|0|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d12px\u201d border_color_top=\u201d#00b2e2\u2033 global_module=\u201d133\u2033 locked=\u201doff\u201d global_colors_info=\u201d{}\u201d][et_pb_row column_structure=\u201d1_4,1_4,1_2\u2033 make_equal=\u201don\u201d module_class=\u201d et_pb_row_fullwidth\u201d _builder_version=\u201d4.16\u2033 width=\u201d89%\u201d width_tablet=\u201d80%\u201d width_phone=\u201d\u201d width_last_edited=\u201don|desktop\u201d max_width=\u201d89%\u201d max_width_tablet=\u201d80%\u201d 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global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":" Italiano: [et_pb_section fb_built=\u201d1\u2033 fullwidth=\u201don\u201d disabled_on=\u201doff|off|off\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d0px|0px|0px|0|false|false\u201d border_width_bottom=\u201d55px\u201d border_color_bottom=\u201d#29327a\u201d locked=\u201doff\u201d global_colors_info=\u201d{}\u201d][et_pb_fullwidth_header background_overlay_color=\u201drgba(0,0,0,0)\u201d _builder_version=\u201d4.16\u2033 title_font=\u201d||||||||\u201d Italiano: title_font_size=\u201d55\u2033 background_color=\u201d#29327a\u201d background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/bubbles-header.jpg\u201d background_position=\u201dbottom_right\u201d custom_padding=\u201d11.5vw||11.5vw||true\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d|56px||\u201d custom_padding_last_edited=\u201don|desktop\u201d title_font_size_tablet=\u201d45px\u201d title_font_size_phone=\u201d40px\u201d title_font_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 custom_css_main_element=\u201dbackground-position: center !important;\u201d global_colors_info=\u201d{}\u201d] Portavoce [\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 use_custom_gutter=\u201don\u201d gutter_width=\u201d1\u2033 specialty=\u201don\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201don|desktop\u201d module_class_1=\u201dsidebar-secondary-nav\u201d module_class=\u201dhandprint-bg\u201d _builder_version=\u201d4.16\u2033 background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png\u201d parallax=\u201don\u201d parallax_method=\u201doff\u201d inner_width=\u201d100%\u201d inner_max_width=\u201d100%\u201d custom_padding=\u201d0|0px|54px|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d10px\u201d border_color_top=\u201d#8fd2ed\u201d use_custom_width=\u201don\u201d width_unit=\u201doff\u201d custom_width_percent=\u201d100%\u201d [\u2026]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\t\t\t\t[vc_row][vc_column][vc_custom_heading text=\"Spokespeople\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\"][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\r\n Meghan is an accomplished cellist and violinist, high school cross country and track team athlete and published poet. She is a senior in high school and she lives with her family in Massachusetts.\u00a0 Meghan now serves as spokesperson for The Progeria Research Foundation, from the perspective of a young adult with Progeria.\u00a0 In this role Meghan focuses on engaging youth around such events as Hats ON for Progeria, sharing her ideas on how to impact people through social media, and participating in PRF media outreach.<\/p>\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_empty_space][vc_column_text] Working closely with the Board of Directors, committees, staff and volunteers, Ms. Gordon is responsible for ensuring The Progeria Research Foundation\u2019s financial growth, program development and day to day management.<\/p>\r\nMs. Gordon is a graduate of Tufts University and Northeastern University School of Law, and is an attorney licensed to practice in Massachusetts since 1988 and Florida since 1990. She has extensive civil litigation experience in both states. Locally, she is a past Trustee of Temple Beth Shalom in Peabody, Massachusetts, a member of the Peabody Chamber of Commerce, and has served on the Peabody Board of Registrars since 2006. Nationally, Ms. Gordon serves on the Board of Advisors of\u00a0Global Genes|RARE Project\u00a0and the\u00a0Rare Disease Report.\u00a0\u00a0She is the 2004 winner of the North of Boston Business and Professional Women of the Year award for non-profit organizations, and the 2005 recipient of the Mary Upton Ferrin Award for leadership in her community. She was honored as a Community Hero by Jewish Family Services in April 2009. Under her leadership as PRF\u2019s founding President and Executive Director, PRF was awarded a 4-star Charity Navigator rating, and received Research!America\u2019s 2014 Paul G. Rogers Distinguished Organization Advocacy Award for bringing progeria from obscurity to the forefront of successful translational research.\r\n\r\n 16-year-old John Tacket, PRF's first Youth Ambassador, passed away Wednesday, March 3rd, 2004. John was an incredible person who never let his condition slow him down. In between his school activities, work and passion for the drums, he welcomed talking to others, especially kids, about Progeria because he felt it was important that people be educated about it. John was a key member of the panel that announced the Progeria gene finding in April 2003 in Washington, DC. He answered reporters' questions and commented that it was an exciting time for him and his friends. We are proud to have known John and PRF is forever grateful for his contributions in raising awareness about Progeria and the work of PRF. He was an inspiration to us all. John will be missed greatly.<\/p>\r\nClick here to see an interview with John, taken when he was 13 years old.<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]\r\n\r\n[caption id=\"\" align=\"alignnone\" width=\"150\"]Iscrizione<\/h2>\n
per il nostro<\/h2>\n
Aggiornamenti!<\/h2>\n
Insieme, noi<\/h2>\n
VOLERE<\/em><\/h2>\n
trova la cura!<\/h2>\n
PRF Spokespeople<\/a><\/h1>\r\n
\r\n \t
![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/02\/Meghan-workshop-speech-2016-1.jpg\")
Meghan gives a captivating speech on the opening night of PRF\u2019s 2016 International Progeria Workshop.<\/span>[\/caption]\r\n\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\nMeghan Waldron<\/h1>\r\nPRF\u2019s Ambassador<\/strong>\r\n
![](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/Audrey-gala-09.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\nAudrey Gordon, Esq.<\/h1>\r\nPresident and Executive Director<\/strong>\r\n
\r\n\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_empty_space][vc_column_text]![\"\"](\"https:\/\/www.progeriaresearch.org\/assets\/images\/Lelsiesp.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Leslie Gordon, MD, PhD<\/h1>\r\nMedical Director<\/strong>\r\n\r\nLeslie Gordon is a co-founder of The Progeria Research Foundation and serves as the organization's volunteer Medical Director. Dr. Gordon is the Principal Investigator for ongoing PRF programs for Progeria, including the\u00a0PRF International Progeria Registry<\/a>,\u00a0Medical and Research Database<\/a>,\u00a0Cell and Tissue Bank<\/a>, and the\u00a0Genetic Diagnostics Program<\/a>. She has organized 8 National Institutes of Health-funded, international\u00a0scientific meetings<\/a>\u00a0on Progeria. She is Professor of Pediatrics Research at Hasbro Children\u2019s Hospital and the Alpert Medical School of Brown University in Providence, RI; Research Associate in Anesthesia at Harvard Medical School and Boston Children\u2019s Hospital and Research Scientist at Women & Infants Hospital, all in Boston, MA. She was co-author on the 2003 gene discovery for Progeria, lead author of the 2012 Progeria treatment discovery study, and is co-chair of four\u00a0Progeria clinical drug trials<\/a>\u00a0at Boston Children\u2019s Hospital.\r\n
![\"Scott](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/berns.jpg\")
[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Scott D. Berns, MD, MPH, FAAP<\/h1>\r\nChair, Board of Directors<\/strong>\r\n\r\nAfter serving for 14 years at the March of Dimes National Office, where he was the Senior Vice President of Chapter Programs and Deputy Medical Office, in October 2015 Dr. Berns became President and CEO of the NICHQ (National Institute for Children\u2019s Health Quality), an independent, nonprofit organization working to improve children\u2019s health.\r\n\r\nScott is a board-certified pediatrician and pediatric emergency physician. He is a Clinical Professor of Pediatrics at the Warren Alpert Medical School of Brown University and Clinical Professor of Health Services, Policy and Practice at the Brown School of Public Health in Providence, RI. He earned a masters of public health from the Harvard School of Public Health with a concentration in health, policy and management, and completed a one-year White House Fellowship where he served as a Special Assistant to the U.S. Secretary of Transportation.\r\n\r\nScott has received the Willis Wingert Award for excellence in research in pediatric emergency medicine from the American Academy of Pediatrics, a national award from the National Perinatal Association, a public health service award from the U.S. Department of Transportation, and the 2015 Impact Award from the White House Fellows Foundation & Association.\r\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]
![\"John](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/John-jpg.jpg\")
\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>In Memory of John Tacket, PRF's first Youth Ambassador<\/h1>\r\n
![\"\"](\"https:\/\/www.progeriaresearch.org\/assets\/images\/about_prf_images\/000_0004sm.jpg\")
Thank you to the family of Megan Nighbor, who served as PRF\u2019s first ambassador family. The Nighbors were true trailblazers in raising awareness and fundraising, and continue to support PRF in these important activities.[\/caption]\r\n\r\n[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\"][vc_column_text]\r\n<\/a>Steve, Sandy, Megan, Michaela and Josh Nighbor<\/h1>\r\nPRF's\u00a0 Ambassador Family 2005 \u2013 January 2010<\/strong>[\/vc_column_text][\/vc_column][\/vc_row]\t\t","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-964","page","type-page","status-publish","hentry"],"yoast_head":"\n