C'est dominant.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n
[\/et_pb_toggle][et_pb_toggle title=”4. I need to interview a researcher or other expert in the field of Progeria.” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”4. I need to interview a researcher or other expert in the field of Progeria.” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n
Malheureusement, en raison du grand nombre de demandes et de notre personnel r\u00e9duit, nous ne pouvons pas fournir d'interviews et nous ne fournissons pas les coordonn\u00e9es des autres. Cependant, notre directrice m\u00e9dicale, le Dr Leslie Gordon, a contribu\u00e9 \u00e0 la cr\u00e9ation de cette FAQ et de toutes les autres informations sur la prog\u00e9ria qui apparaissent sur ce site. Nous esp\u00e9rons donc que cela suffira \u00e0 satisfaire aux exigences d'interview pour votre rapport. Le Dr Gordon est une experte de premier plan sur la prog\u00e9ria ; elle est la directrice de tous les programmes li\u00e9s \u00e0 la recherche du PRF, y compris notre registre international de la prog\u00e9ria et notre programme de tests diagnostiques, elle est l'auteur de dizaines de publications scientifiques qui paraissent dans des revues \u00e0 comit\u00e9 de lecture et tr\u00e8s respect\u00e9es, elle a \u00e9t\u00e9 l'une des leaders de tous les essais cliniques de m\u00e9dicaments de Boston et a examin\u00e9 plus d'enfants atteints de prog\u00e9ria que quiconque au monde.<\/p>\n
En outre,\u00a0Cliquez ici<\/a>\u00a0pour voir une pr\u00e9sentation d'une heure des cofondateurs de PRF, le Dr Leslie Gordon (directeur m\u00e9dical de PRF) et le Dr Scott Berns (pr\u00e9sident du conseil d'administration de PRF)<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”5. How many children in the world are diagnosed with Progeria?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”5. How many children in the world are diagnosed with Progeria?” _builder_version=”4.27.5″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” hover_enabled=”0″ z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n S'il te pla\u00eet Cliquez ici<\/a><\/span> pour les derniers \u00ab\u00a0Quick Facts\u00a0\u00bb de PRF. Sur la base de nos donn\u00e9es de pr\u00e9valence, nous pensons qu'il y a encore beaucoup plus d'enfants dans le monde atteints de prog\u00e9ria qui n'ont pas \u00e9t\u00e9 d\u00e9tect\u00e9s et diagnostiqu\u00e9s, et qui ne sont toujours pas trait\u00e9s. Visitez \u00a0Trouver les enfants<\/a>\u00a0<\/span>pour savoir comment vous pouvez aider et en savoir plus sur nos efforts dans le monde entier pour trouver et aider davantage d'enfants atteints de prog\u00e9ria !<\/span><\/p>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”6. Where do the children live?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”6. Where do the children live?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” vertical_offset_tablet=”0″ horizontal_offset_tablet=”0″ custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ title_text_shadow_horizontal_length_tablet=”0px” title_text_shadow_vertical_length_tablet=”0px” title_text_shadow_blur_strength_tablet=”1px” closed_title_text_shadow_horizontal_length_tablet=”0px” closed_title_text_shadow_vertical_length_tablet=”0px” closed_title_text_shadow_blur_strength_tablet=”1px” body_text_shadow_horizontal_length_tablet=”0px” body_text_shadow_vertical_length_tablet=”0px” body_text_shadow_blur_strength_tablet=”1px” body_link_text_shadow_horizontal_length_tablet=”0px” body_link_text_shadow_vertical_length_tablet=”0px” body_link_text_shadow_blur_strength_tablet=”1px” body_ul_text_shadow_horizontal_length_tablet=”0px” body_ul_text_shadow_vertical_length_tablet=”0px” body_ul_text_shadow_blur_strength_tablet=”1px” body_ol_text_shadow_horizontal_length_tablet=”0px” body_ol_text_shadow_vertical_length_tablet=”0px” body_ol_text_shadow_blur_strength_tablet=”1px” body_quote_text_shadow_horizontal_length_tablet=”0px” body_quote_text_shadow_vertical_length_tablet=”0px” body_quote_text_shadow_blur_strength_tablet=”1px” border_width_all=”0px” box_shadow_horizontal_tablet=”0px” box_shadow_vertical_tablet=”0px” box_shadow_blur_tablet=”40px” box_shadow_spread_tablet=”0px” text_shadow_horizontal_length_tablet=”0px” text_shadow_vertical_length_tablet=”0px” text_shadow_blur_strength_tablet=”1px” global_colors_info=”{}”]<\/p>\n Nos informations sur les enfants atteints de prog\u00e9ria sont confidentielles, y compris les d\u00e9tails sur leur lieu de r\u00e9sidence. Cependant,\u00a0Cliquez ici<\/a>\u00a0pour afficher une carte afin de voir les emplacements approximatifs o\u00f9 ils r\u00e9sident.<\/p>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”7. Do the children participate in school activities, or are they limited because they have Progeria?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”7. Do the children participate in school activities, or are they limited because they have Progeria?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n [\/et_pb_toggle][et_pb_toggle title=”9. Does the disease affect their mental abilities?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”9. Does the disease affect their mental abilities?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Pas du tout. Les enfants atteints de prog\u00e9ria sont intelligents et pleins d\u2019\u00e9nergie, tout comme les autres enfants de leur \u00e2ge.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”10. Why do children with Progeria age in body so rapidly and not in mind?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”10. Why do children with Progeria age in body so rapidly and not in mind?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Le LMNA n\u2019est pas exprim\u00e9 par les cellules c\u00e9r\u00e9brales, donc la mutation g\u00e9n\u00e9tique n\u2019affecte pas le cerveau.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”11. What issues do you think are most important in the care of a patient with Progeria?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”11. What issues do you think are most important in the care of a patient with Progeria?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Il est important de se rappeler que tous les enfants atteints de prog\u00e9ria ont un intellect et une personnalit\u00e9 adapt\u00e9s \u00e0 leur \u00e2ge. Un enfant de huit ans atteint de prog\u00e9ria pensera et agira comme n'importe quel autre enfant de huit ans. Les enfants atteints de prog\u00e9ria sont intelligents, dr\u00f4les et pleins de vie. C'est le corps de ces enfants qui est charg\u00e9 de pr\u00e9disposition g\u00e9n\u00e9tique aux maladies du vieillissement et du c\u0153ur, et non leur esprit. Ils ont donc besoin que leur \u00e9cole, leur communaut\u00e9 et leurs amis les traitent comme n'importe quel autre enfant (avec quelques ajustements mineurs en fonction de leur taille).\u00a0Apr\u00e8s tout, la prog\u00e9ria n\u2019est qu\u2019une petite partie de ce qu\u2019ils sont !<\/em><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”12. Are there any treatments available?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”12. Are there any treatments available?” _builder_version=”4.17.6″ title_text_color=”#00b2e2″ background_color=”#ffffff” vertical_offset_tablet=”0″ horizontal_offset_tablet=”0″ custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ title_text_shadow_horizontal_length_tablet=”0px” title_text_shadow_vertical_length_tablet=”0px” title_text_shadow_blur_strength_tablet=”1px” closed_title_text_shadow_horizontal_length_tablet=”0px” closed_title_text_shadow_vertical_length_tablet=”0px” closed_title_text_shadow_blur_strength_tablet=”1px” body_text_shadow_horizontal_length_tablet=”0px” body_text_shadow_vertical_length_tablet=”0px” body_text_shadow_blur_strength_tablet=”1px” body_link_text_shadow_horizontal_length_tablet=”0px” body_link_text_shadow_vertical_length_tablet=”0px” body_link_text_shadow_blur_strength_tablet=”1px” body_ul_text_shadow_horizontal_length_tablet=”0px” body_ul_text_shadow_vertical_length_tablet=”0px” body_ul_text_shadow_blur_strength_tablet=”1px” body_ol_text_shadow_horizontal_length_tablet=”0px” body_ol_text_shadow_vertical_length_tablet=”0px” body_ol_text_shadow_blur_strength_tablet=”1px” body_quote_text_shadow_horizontal_length_tablet=”0px” body_quote_text_shadow_vertical_length_tablet=”0px” body_quote_text_shadow_blur_strength_tablet=”1px” border_width_all=”0px” box_shadow_horizontal_tablet=”0px” box_shadow_vertical_tablet=”0px” box_shadow_blur_tablet=”40px” box_shadow_spread_tablet=”0px” text_shadow_horizontal_length_tablet=”0px” text_shadow_vertical_length_tablet=”0px” text_shadow_blur_strength_tablet=”1px” global_colors_info=”{}”]<\/p>\n Oui. En novembre 2020, la PRF a r\u00e9alis\u00e9 une partie importante de sa mission : le tout premier traitement contre la prog\u00e9ria, le lonafarnib (nom de marque \u00ab Zokinvy \u00bb). a re\u00e7u l'approbation de la Food & Drug Administration des \u00c9tats-Unis (US FDA)<\/a>. Avec cette r\u00e9ussite, la Progeria rejoint d\u00e9sormais moins de\u00a05% des maladies rares avec un traitement approuv\u00e9 par la FDA.*<\/strong><\/p>\n En 2019, la Fondation de recherche sur la prog\u00e9ria a publi\u00e9 notre deuxi\u00e8me \u00e9dition de Le manuel de la prog\u00e9ria<\/a>, pour les familles, les m\u00e9decins, les enseignants et autres personnes qui s'occupent d'enfants et de jeunes adultes atteints de prog\u00e9ria. Avec 33% de mat\u00e9riel suppl\u00e9mentaire, cette version mise \u00e0 jour de 131 pages illustre les progr\u00e8s r\u00e9alis\u00e9s dans notre compr\u00e9hension clinique de la prog\u00e9ria depuis la publication de la premi\u00e8re \u00e9dition en 2010. Les ajouts comprennent des sections sur la g\u00e9n\u00e9tique et le conseil g\u00e9n\u00e9tique, le traitement au lonafarnib et de nouvelles recommandations cardiovasculaires pour les soignants.<\/p>\n Nous n'avons pas encore trouv\u00e9 de rem\u00e8de, mais nous savons que les soins quotidiens font une \u00e9norme diff\u00e9rence dans leur qualit\u00e9 de vie. Des th\u00e9rapies nutritionnelles, physiques et professionnelles adapt\u00e9es, ainsi que des soins cardiaques et autres pr\u00e9ventifs sont essentiels. Le manuel est disponible en anglais, en japonais et en espagnol.<\/p>\n *300 maladies rares qui ont un traitement approuv\u00e9 par la FDA (https:\/\/www.rarediseases.info.nih.gov\/diseases\/FDS-orphan-drugs)\/7,000<\/a>\u00a0maladies rares pour lesquelles la base mol\u00e9culaire est connue (www.OMIM.org<\/a>) =4.2%<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”13. Are any scientists close to finding a cure?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”13. Are any scientists close to finding a cure?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n La Fondation de recherche sur la prog\u00e9ria a contribu\u00e9 \u00e0 la d\u00e9couverte du g\u00e8ne responsable de la prog\u00e9ria et est d\u00e9sormais impliqu\u00e9e dans\u00a0essais cliniques de m\u00e9dicaments,<\/a>\u00a0Nous testons actuellement des m\u00e9dicaments qui semblent tr\u00e8s prometteurs pour traiter efficacement les enfants atteints de prog\u00e9ria. Nous avons fait d\u2019\u00e9normes progr\u00e8s, mais personne ne peut pr\u00e9dire combien de temps cela prendra.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”14. What research are you currently doing on the disease?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”14. What research are you currently doing on the disease?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Voir notre\u00a0Les subventions que nous avons financ\u00e9es\u00a0<\/a>section pour les descriptions de projets, notre\u00a0Essais cliniques<\/a>\u00a0mises \u00e0 jour et\u00a0PRF dans l'actualit\u00e9<\/a>\u00a0pour les derniers r\u00e9sultats de recherche.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”15. I would like permission to use some of the photos and information from your website for my project.” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”15. I would like permission to use some of the photos and information from your website for my project.” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Vous pouvez utiliser n'importe quelle information textuelle recueillie sur notre site Web pour votre projet. Cependant, nous pr\u00e9f\u00e9rerions que vous n'utilisiez pas de photos des enfants provenant de notre site Web. Nous vous sugg\u00e9rons d'utiliser notre\u00a0brochure<\/a>\u00a0et\u00a0bulletin<\/a>, qui contiennent de nombreuses photos d'enfants atteints de prog\u00e9ria, comme visuels. Si vous nous donnez votre adresse, nous pouvons vous en envoyer une.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=” 16. I saw HBO Film\u2019s Life According to Sam and\/or a program on TV and would like a copy of the tape.” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=” 16. I saw HBO Film\u2019s Life According to Sam and\/or a program on TV and would like a copy of the tape.” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Vous pouvez d\u00e9sormais acheter le DVD La vie selon Sam sur le site\u00a0Boutique HBO<\/a>. Veuillez \u00e9galement consulter notre\u00a0Page LATS<\/a>\u00a0et apprenez-en davantage sur ce merveilleux film et ce documentaire captivant sur l'amour, la vie et l'espoir pour les enfants atteints de prog\u00e9ria.<\/p>\n La Fondation de recherche sur la prog\u00e9ria ne poss\u00e8de pas de cassettes vid\u00e9o d'\u00e9missions sur la prog\u00e9ria. Ces documentaires et autres vid\u00e9os sont produits de mani\u00e8re priv\u00e9e et, en raison des restrictions de droits d'auteur, ne peuvent pas \u00eatre vendus par des organisations priv\u00e9es ou des particuliers. Vous pouvez contacter le r\u00e9seau sur lequel vous avez vu la vid\u00e9o ; il se peut qu'il vous en fournisse une contre r\u00e9mun\u00e9ration. De plus, certaines \u00e9missions sont en ligne, comme la\u00a0Spectacle de Katie<\/a>. Vous devriez \u00e9galement consulter deux conf\u00e9rences TEDx inspirantes du Dr Leslie Gordon, notre directrice m\u00e9dicale, et de Sam Berns sur notre\u00a0Page des conf\u00e9rences TEDX<\/a>. Enfin, nous vous invitons \u00e0 visiter notre\u00a0YouTube<\/a>\u00a0page pour des dizaines de vid\u00e9os informatives et inspirantes.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=” 17. What would you like people to know about Progeria now?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=” 17. What would you like people to know about Progeria now?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Bien que la prog\u00e9ria soit une maladie extr\u00eamement rare, tous les enfants atteints de cette maladie meurent d\u2019ath\u00e9roscl\u00e9rose pr\u00e9matur\u00e9e s\u00e9v\u00e8re (maladie cardiaque). En aidant les enfants atteints de la prog\u00e9ria, vous contribuez \u00e0 sauver la vie d\u2019enfants atteints d\u2019une maladie mortelle 100%. En m\u00eame temps, vous nous aidez tous, car la recherche dans ce domaine aidera non seulement la Progeria Research Foundation \u00e0 atteindre son objectif de trouver un traitement et un rem\u00e8de, mais elle pourrait \u00e9galement apporter des r\u00e9ponses aux myst\u00e8res du processus naturel de vieillissement, des maladies cardiaques et des accidents vasculaires c\u00e9r\u00e9braux (l\u2019une des principales causes de mortalit\u00e9 au monde).<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”18. I would like to study Progeria for a career, what courses of study do you suggest I take?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”18. I would like to study Progeria for a career, what courses of study do you suggest I take?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Wow, c'est formidable ! Cette r\u00e9ponse varie en fonction du stade o\u00f9 vous en \u00eates dans votre scolarit\u00e9. Nous vous sugg\u00e9rons de consulter votre conseiller d'orientation ou votre conseiller d'orientation professionnelle \u00e0 l'\u00e9cole pour conna\u00eetre la meilleure marche \u00e0 suivre.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”19. I\u2019d like to be a pen pal to a child with Progeria or send them a present.” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”19. I\u2019d like to be a pen pal to a child with Progeria or send them a present.” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Votre id\u00e9e de vouloir devenir des correspondants est vraiment g\u00e9niale, mais toutes les coordonn\u00e9es des familles et des enfants sont confidentielles, nous ne pourrions donc pas vous donner leurs noms et adresses e-mail. Cependant,\u00a0Page \u00ab Rencontrez les enfants \u00bb<\/a>\u00a0r\u00e9pertorie quelques sites Web destin\u00e9s aux familles dont les enfants sont atteints de prog\u00e9ria. Vous pouvez les contacter via leurs sites Web et leur demander s'ils souhaitent avoir un correspondant ou un cadeau.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”20. I would like to talk to someone by phone or in person about living with Progeria.” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”20. I would like to talk to someone by phone or in person about living with Progeria.” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Pour les m\u00eames raisons de confidentialit\u00e9 que celles d\u00e9crites dans la r\u00e9ponse ci-dessus, nous ne pouvons pas vous mettre en contact avec quelqu'un pour parler de la vie avec la Progeria. Veuillez vous r\u00e9f\u00e9rer \u00e0 #8 ci-dessus pour obtenir des informations sur ce sujet.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=”21. I\u2019d like to volunteer to work with the children. Do you have a camp that you run, or is there a hospital that I can contact regarding working with children with Progeria?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=”21. I\u2019d like to volunteer to work with the children. Do you have a camp that you run, or is there a hospital that I can contact regarding working with children with Progeria?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n Nous n\u2019avons pas de programmes qui nous permettent d\u2019avoir un contact direct avec les enfants comme vous le pensez. Les enfants sont situ\u00e9s partout dans le monde et nos contacts avec les familles se font presque exclusivement par courrier \u00e9lectronique, t\u00e9l\u00e9phone et courrier postal. Nous ne participons pas \u00e0 des \u00ab camps \u00bb ou autres r\u00e9unions sociales qui les rassemblent et qui vous permettent de travailler avec les enfants. Mais nous pouvons toujours utiliser un autre b\u00e9n\u00e9vole dans notre \u00e9quipe !\u00a0Autres fa\u00e7ons d\u2019aider<\/a>\u00a0section pour plus d'informations. Enfants, veuillez demander l'autorisation et l'aide de vos parents avant de faire du b\u00e9n\u00e9volat.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=” 22. What can people do to help? Where do you get most of your funding?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=” 22. What can people do to help? Where do you get most of your funding?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n La Fondation de recherche sur la prog\u00e9ria a pu faire beaucoup avec une petite somme d'argent. Nous n'avons pas de fonds de dotation et nous d\u00e9pendons du soutien continu d'autres personnes qui soutiennent notre mission. Chaque petit geste compte \u2013 ces dons de dix et vingt dollars s'additionnent vraiment ! Veuillez consulter notre\u00a0Cr\u00e9ateurs de miracles<\/a>\u00a0pour ne citer que quelques exemples de la formidable fa\u00e7on dont les gens se sont impliqu\u00e9s, comme un groupe de lyc\u00e9ens qui ont produit un spectacle, un policier fran\u00e7ais qui a organis\u00e9 un march\u00e9 aux puces et une banque locale qui a organis\u00e9 une journ\u00e9e d\u00e9contract\u00e9e \u2013 tout cela pour collecter des fonds pour le PRF.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][et_pb_toggle title=” 23. Is there a chapter near where I live that I can contact?” open_toggle_background_color=”#f7f7f7″ closed_toggle_text_color=”#ffffff” closed_toggle_background_color=”#00b2e2″ icon_color=”#ffc15e” open_icon_color=”#ffc15e” admin_label=” 23. Is there a chapter near where I live that I can contact?” _builder_version=”4.16″ title_text_color=”#00b2e2″ background_color=”#ffffff” custom_margin=”10px||10px||true” custom_padding=”|50px||50px||true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”25%” link_option_url_new_window=”on” z_index_tablet=”500″ border_width_all=”0px” global_colors_info=”{}”]<\/p>\n PRF compte d\u00e9sormais plusieurs sections aux \u00c9tats-Unis ! Visitez notre\u00a0Section des chapitres<\/a>\u00a0pour soutenir un chapitre dans votre r\u00e9gion et en savoir plus sur le travail formidable que ces groupes accomplissent pour nous aider dans notre qu\u00eate d'un rem\u00e8de. Nous aimerions que vous rejoigniez nos chapitres de quelque mani\u00e8re que ce soit. Ensemble, nous\u00a0VOLONT\u00c9<\/em>\u00a0trouve le rem\u00e8de !<\/p>\n<\/div>\n<\/div>\n Depuis sa cr\u00e9ation, PRF a b\u00e9n\u00e9fici\u00e9 du leadership de l'avocate Audrey Gordon, la tante de Sam, qui occupe les fonctions de pr\u00e9sidente et de directrice g\u00e9n\u00e9rale de l'organisation.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n [\/et_pb_toggle][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ module_class=”footer” _builder_version=”4.21.0″ background_color=”#29327a” custom_margin=”-2px|||||” custom_padding=”0|0px|0|0px|false|false” z_index_tablet=”500″ border_width_top=”12px” border_color_top=”#00b2e2″ global_module=”133″ locked=”off” global_colors_info=”{}”][et_pb_row column_structure=”1_4,1_4,1_2″ make_equal=”on” module_class=” et_pb_row_fullwidth” _builder_version=”4.16″ width=”89%” width_tablet=”80%” width_phone=”” width_last_edited=”on|desktop” max_width=”89%” max_width_tablet=”80%” max_width_phone=”” max_width_last_edited=”on|desktop” z_index_tablet=”500″ make_fullwidth=”on” width_unit=”off” custom_width_percent=”100%” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_cta button_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” button_text=”Sign Up Now” admin_label=”Sign Up for Updates” module_class=”sign-btn” _builder_version=”4.27.4″ header_font_size=”25px” background_color=”#29327a” animation_style=”slide” animation_direction=”left” animation_intensity_slide=”25%” link_option_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” header_font_size_tablet=”” header_font_size_phone=”30px” header_font_size_last_edited=”on|desktop” z_index_tablet=”500″ border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}” button_bg_color__hover_enabled=”on” button_bg_color__hover=”#8fd2ed” button_border_color__hover_enabled=”on”]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dFaites un don maintenant\u201d admin_label=\u201dEnsemble, nous trouverons le rem\u00e8de !\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d bouton_bg_color__hover=\u201d#8fd2ed\u201d bouton_border_color__hover_enabled=\u201don\u201d]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/2026-footer-image-copy.png” title_text=”2026 footer image copy” _builder_version=”4.27.5″ _module_preset=”default” custom_margin=”35px||||false|false” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":" As we continue to spread awareness across the globe, the Progeria Research Foundation website is a great resource for school reports.\t\t\t\t\t\t<\/p>","protected":false},"author":1,"featured_media":12079,"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=\"For School Reports\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\"][vc_column_text]S'inscrire<\/h2>\n
pour notre<\/h2>\n
Mises \u00e0 jour\u00a0!<\/h2>\n
Ensemble, nous<\/h2>\n
VOLONT\u00c9<\/em><\/h2>\n
trouve le rem\u00e8de !<\/h2>\n
![](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/02\/lindsay-Jul08-crpd.jpg\")
\r\n\r\n\u201cMy fifteen-year-old daughter just wrote a research paper on this topic, and she was so moved by the precious children, that she asked to donate her own money to this cause. It's great that you have things on the web that can give these children exposure and a voice to those of us who may never personally meet one!\u201d Lisa Hagen\r\n\r\nDo you have questions you need answered for a school report? Do you want to learn more about the children? Are you interested in knowing more about Progeria and the work PRF does? We've got the answers for you right here!\r\n\r\nWe love the fact that awareness about Progeria is spreading throughout the world and that you want to learn more, thank you! But we are so very busy at the office doing all the things that are needed to advance our mission of finding treatments and a cure that\u00a0we can no longer individually answer the many requests we receive from around the world.\u00a0Instead, we have prepared this Question and Answer sheet to help provide you with the information you're looking for, taking the most common questions we are asked and answering them below. We hope this helps you get top grades on your school report, or just helps you understand more about Progeria and The Progeria Research Foundation so that you can help spread the word about the wonderful work we are doing for these special children.\r\n\r\n[\/vc_column_text][vc_separator][vc_column_text]1. I'm doing a school report on Progeria, can you help me get more information on this subject?<\/strong>\r\n\r\nIn addition to finding the cure and effective treatments for Hutchinson-Gilford Progeria Syndrome, part of our mission is to promote public awareness of this disease. By doing a report on Progeria, you are helping us accomplish that part of our mission. Thanks so much, we're glad to help you!\r\n\r\nBefore you read any further, please visit our Frequently Asked Questions<\/a> section to learn more about Progeria. Other sections you may find helpful are The Connection to Other Diseases<\/a> , and The Science Behind Progeria<\/a>. The information on those pages is not repeated here.\r\n\r\nIf you are looking for more advanced, scientific information, please visit https:\/\/www.pubmed.gov\/<\/a> which provides abstracts for many scientific publications on Progeria.\r\n\r\nFor key scientific publications that have helped advance Progeria research since the 2003 Progeria gene discovery, visit our What\u2019s News in Progeria Research<\/a> section.\r\n\r\nAlso, you can access information on the NORD (National Organization of Rare Diseases) web site. Go to https:\/\/www.rarediseases.org\/<\/a>, and click on their Rare Diseases Database, then type \u201cHutchinson Gilford Progeria\u201d in the search box, and a page on Progeria will appear. If you want a detailed report, there may be a cost.\r\n\r\nFor books on Progeria, here are a few publications that you may find useful:\r\n\r\nKeith Moore, father of a child who died of Progeria, wrote Old at Age 3,<\/a> <\/strong>the story of Zachary Moore,<\/em> to share the story of his son\u2019s extraordinary life.\r\n\r\nDr. Leslie Gordon, PRF\u2019s Medical Director, wrote a chapter on Progeria for the World Book Online Reference Center<\/em>\u00a0![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/04\/iconPDF.gif\")
World Book Progeria<\/a>\u00a0and the print edition of the 2008 World Book Encyclopedia\r\n\r\nDr. Gordon, W. Ted Brown and Frank Rothman wrote a chapter entitled LMNA and the Hutchinson-Gilford Progeria Syndrome and Associated Laminopathies for the book Inborn Errors of Development: The molecular basis of clinical disorders of morphogenesis<\/em> (2007, 2nd ed.) 139: 1219-1229.\r\n\r\nIf you give us your address, we can send you a ![](\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\")
brochure<\/a> <\/strong>and our latest newsletter<\/a>\u00a0<\/strong>to include with your report.\r\n\r\n
\r\n\r\n<\/a>2. I heard that the Progeria gene had been discovered, where can I find out more about this?<\/strong>\r\n\r\nOn April 16, 2003, it was announced that the gene for Progeria had been discovered, and PRF played a major role in that discovery! Go to Progeria Gene Discovered<\/a> for more information. Also, here are some cites to scientific articles on the gene mutation:\r\n\r\n\"Recurrent de novo point mutations in lamin A cause Hutchinson-Gilford Progeria Syndrome\", Vol. 423, May 15, 2003, Nature.\r\n\r\n\"Mutation causes early-aging syndrome\", Vol. 163, p.260, April 26, 2003, Science News.\r\n\r\n\"Cause of Progeria's Premature Aging Found; expected to Provide Insight into Normal Aging Process\", Vol. 289, no. 19, pp. 2481-2482, May 21, 2003, JAMA.\r\n\r\n
\r\n\r\n<\/a>3. Is Progeria a dominant or recessive disease?<\/strong>\r\n\r\nIt is Dominant.\r\n\r\n
\r\n\r\n<\/a>4. I need to interview a researcher or other expert in the field of Progeria.<\/strong>\r\n\r\nUnfortunately, due to the large number of requests and our small staff, we cannot provide interviews and we do not provide the contact information of others. However, our Medical Director Dr. Leslie Gordon has helped create this Q and A and all other information on Progeria that appears on this site, so we hope that is sufficient to satisfy the interview requirement for your report. Dr. Gordon is a leading expert on Progeria; she is the director of all of PRF\u2019s research-related programs including our International Progeria Registry and Diagnostics Testing program, has authored dozens of scientific publications that appear in peer-reviewed, well-respected journals, has been one of the leaders in all of the Boston clinical drug trials, and has examined more children with Progeria than anyone in the world.\r\n\r\nIn addition, click here<\/a> to view a 1-hour presentation by PRF co-founders Dr. Leslie Gordon (PRF\u2019s Medical Director) and Dr. Scott Berns (PRF\u2019s Chairman of the Board)\r\n\r\n
\r\n\r\n<\/a>5. How many children in the world are diagnosed with Progeria?<\/strong>\r\n\r\nYou can\u00a0 Click Here<\/a>\u00a0for the most recent numbers and countries, however, we believe that there are more children who have this condition, but have not yet been diagnosed. Visit FindtheOther150.org<\/a> for ways you can help, and hear from parents and experts through podcasts.\r\n\r\n
\r\n\r\n<\/a>6. Where do the children live?<\/strong>\r\n\r\nOur information about children with Progeria is confidential, including details about where they live. However, Click here<\/a> to view a map to see the approximate locations they reside in.\r\n\r\n
\r\n\r\n<\/a>7. Do the children participate in school activities, or are they limited because they have Progeria?<\/strong>\r\n\r\nChildren with Progeria are able to participate in all the same educational programs and sports activities as other children. With the exception of having Progeria, these children are just like their peers - Most have no special capacities or limitations other than those that their shorter stature and perhaps stiff joints cause for some activities. More details on school and general aspects of living with Progeria can be found in chapters 16 and 17 of The Progeria Handbook<\/a>.\r\n\r\n
\r\n\r\n<\/a>8. What is it like for a child to live with Progeria?<\/strong>\r\n\r\nJohn Tackett, our first youth Ambassador, was interviewed about what it's like to live with Progeria and other questions. You can find this information at Interview with John Tacket<\/a>.\r\n\r\nWe also suggest you check out a TEDx MidAtlantic talk by Sam Berns entitled, \u201cMy Philosophy for a Happy Life\u201d on our TedX Talks page.<\/a> This wildly popular talk has inspired millions around the world to look at life in a more positive way.\r\n\r\n
\r\n\r\n<\/a>9. Does the disease affect their mental abilities?<\/strong>\r\n\r\nNot at all. Children with Progeria are intelligent and full of energy just like other kids their age.\r\n\r\n
\r\n\r\n<\/a>10. Why do children with Progeria age in body so rapidly and not in mind?<\/strong>\r\n\r\nLMNA is not expressed by the brain cells, so the gene mutation does not affect the brain.\r\n\r\n
\r\n\r\n<\/a>11. What issues do you think are most important in the care of a patient with Progeria?<\/strong>\r\n\r\nMost of all, it is important to remember that all children with Progeria have age appropriate intellect and personality. An eight-year-old with Progeria will think and act just like every other eight-year-old. Children with Progeria are smart and funny and full of life. It's the bodies of these children that are laden with the genetic predisposition toward conditions of aging and heart disease, not their minds. So they need their schools and communities and their friends to treat them just like any other child (with a few minor adjustments for size). After all, Progeria is just a small part of who they are!<\/em>\r\n\r\n
\r\n\r\n<\/a>12. Are there any treatments available?<\/strong>\r\n\r\nYes. In April 2010, The Progeria Research Foundation published The Progeria Handbook<\/a>,\u00a0for families and doctors. From basic health facts to daily care recommendations to extensive treatment guidelines, this 100-page handbook helps answer many questions for children with Progeria throughout the world. We don't have a cure yet, but we do know that daily care makes a huge difference in their quality of life. Proper nutritional, physical, and occupational therapies, along with preventative cardiac and other care are essential. The handbook is also available in other languages.\r\n\r\nIn addition, history was made in September 2012 when the first-ever drug treatment was discovered.<\/a> Every child in the clinical trial involving Lonafarnib, a farnesyl transferase inhibitor, showed improvement in one or more of four ways: gaining additional weight, better hearing, improved bone structure and\/or, most importantly, increased flexibility of blood vessels. Results of the study, which was funded and coordinated by The Progeria Research Foundation, were published September 24, 2012 in Proceedings of the National Academy of Sciences.<\/strong><\/em><\/a> \u00a0Further studies published\u00a0<\/a>in\u00a0Circulation<\/i><\/b>\u00a0<\/i>in May 2014<\/a>\u00a0and April 2018 in The Journal of The American Medical Association<\/em><\/a> reveal that lonafarnib also increases the children\u2019s estimated lifespan. \u00a0We now know that drugs can improve the disease, as we continue to search for even more effective compounds and ultimately, the cure.\r\n\r\n
\r\n\r\n<\/a>13. Are any scientists close to finding a cure?<\/strong>\r\n\r\nThe Progeria Research Foundation helped in the discovery of the gene that causes Progeria, and is now involved in clinical drug trials,<\/a> testing drugs that show great promise to effectively treat children with Progeria. We have made tremendous progress, but no one can predict how long that will take.\r\n\r\n