{"id":13363,"date":"2021-10-27T10:39:03","date_gmt":"2021-10-27T10:39:03","guid":{"rendered":"https:\/\/www.alttechindustries.com\/?p=13363"},"modified":"2022-04-21T12:19:10","modified_gmt":"2022-04-21T12:19:10","slug":"audrey-hepburn","status":"publish","type":"post","link":"https:\/\/www.alttechindustries.com\/audrey-hepburn\/","title":{"rendered":"HONORING THE LEGACY OF AUDREY HEPBURN"},"content":{"rendered":"\t\t
Actress Audrey Hepburn died of a rare type of cancer, but it was the way she lived her life that inspired her son Sean Hepburn Ferrer,<\/p>
to write two books and become an advocate for all people with rare diseases.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
MY MOTHER BELIEVED strongly that\nevery life matters, Sean Hepburn says.\n<\/p>\n
She demonstrated on a daily basis.\nparticularly through her humanitarian \nwork as a Goodwill Ambassador for\nUNICEF, her strong belief in the value of\nevery life, he says.<\/p>\n
As a result, Ferrer is now an advocate\nfor the National Organization for Rare\nDisorders (NORD) and its sister organiza\ntion in Europe, EURORDIS. He is donat-\ning proceeds from a children’s book he \nhas written to NORD and EURORDIS, He\nserves as the international ambassador\nfor rare disease day.\n<\/p>\n
Sean Hepburn Ferrer, and the Director of Membership for NORD, Lisa Phelps, Sat down to talk about the first international Rare Disease day.\n<\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Sean Hepburn
\n– Awe, that’s wonderful!<\/\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Sean Hepburn
\n– Awe, that’s I know, and yet they are phenomenal. When you put all the numbers together
\n– 60 million worldwide and 30 million in America-those are some serious numbers to reckon with.\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Sean Hepburn
\n– It took a while to get the first diagnosis. We thought she had caught a bug on\none of those trips to Africa for UNICEF. Then she did an endoscopic procedure, but the primary was in the appendix-which is too sharp a corner for the cameras Finally, when they operated on her, they discovered that she had PMP or pseudomyxoma peritonei. At the time it was called adenocarcinoma.\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
PMP is a form of rare cancer that doesn’t develop a tumor, but sort of\nsprinkles the stomach and intestinal cavities. And I have to tell you: we felt a crushing sense of loneliness, a lack of options, and a lack of treatments. But I’m glad to announce that this is now a thing of the past. Not only has medical research come a long way, but the amount of options and treatments are way up. Survival rates are way up and remissions are a reality. That sense of loneliness that we felt, thanks to the work of NORD (National Organization of Rare Disease) and its European counterpart, that feeling has really become a thing of the past.\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Sean Hepburn
\n– Well one of the things I’ve discovered over the last two years is that science and technology are starting to treat regular conditions like they treat rare diseases, So What I believe is going to happen is what we are learning today through the treatment of rare diseases are something that is going to be transposed and utilized in the treatment of regular conditions.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
“WE FELT A CRUSHING SENSE OF LONELINESS, A LACK OF OPTIONS, AND A LACK OF TREATMENTS.”\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Lisa Phelps
\n– Yeah, the nomination for an Oscar was wonderful for this community because with 7000 rare diseases, the lack of attention and awareness for them is so critical. It’s a great film, made by a great family and we’re very happy for them.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Sean Hepburn
\n– I did. I started writing before I was asked to be an ambassador. It’s a book \nthat celebrates the life of a dear friend by the name of Mauricio Saravia. He suffered from a condition called McCune-Albright (syndrome), and yet he lived a fulfilling and complete life, both as an individual and as an artist. The book is called, “Mauricio of Uruguay.” It’s available at Lulu.com. All of the proceeds go to NORD and its European counterpart. \n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
What better way to acquire a children’s book,\nwhich teaches you about courage \nand lightness of heart, to sort \nof start to think in the right terms \nabout what it means to have a rare disease \nor any disease at all.\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Lisa Phelps
\n– Well, we are very thankful for Sean’s support of the rare disease community. It’s incredible to have people like him as ambassadors for the 30 million Americans and 60 million worldwide.\n<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
Lisa Phelps
\n– Yes, It’s a great day that unites the 30 million Americans in the community to help raise awareness and spread the message of the needs and challenges that are faced by patients of rare diseases. To learn more about that day you can go to RareDis easeDay.us.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
SEAN WANTS TO use this opportunity to remind\npatients and their caregivers\nthat they are not alone, to empower\nthem as patient advocates and make them aware of resources\navailable through NORD.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t