Fundraiser for Gurnal Jones\r\n<\/a><\/strong>A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal Jones, who is battling a rare disease called Erdheim-Chester.<\/p>\r\nRare disease marks first awareness week Sept. 14-18\r\n<\/a><\/b>This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention to the medical condition but raising money for research.\r\n<\/a><\/b><\/p>\r\nMason City will serve as hub for worldwide rare disease fundraiser\r\n<\/a><\/strong>Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness of the rare disease. Bob was diagnosed with the rare\u00a0Erdheim-Chester Disease following a knee injury.\r\n\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"2014\"]\r\n\r\n2nd Annual International ECD Medical Symposium Discussed in NIH Newsletter\r\n<\/strong><\/a>The August 2014 NIH Clinical Center Newsletter featured a story about the planned 2014 ECD Medical Symposium hosted by the NIH, in partnership with the ECD Global Alliance.\r\n\r\nBold Initiative to Transform Cancer Care\r\n<\/strong><\/a>A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently enrolled in the vemurafenib trial. Rita's is a remarkable story that begins at the 2 minutes, 22-second mark of this 5-1\/2 minute video.\r\n\r\nBonnie Schulz faces the Erdheim-Chester Disease\r\n<\/strong><\/a>A picture and story (story not available online) about Bonnie Schulz, a patient living with ECD.\r\n\r\nDifficult to diagnose disorders gain support\r\n<\/strong><\/a>A newspaper article was written about Leslie Adler, and her experiences living with ECD.\r\n\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"2013\"]\r\n\r\nWife fighting to save others from rare disease after husband's death\r\n<\/span><\/strong><\/a>TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates Kathy, President of the ECD Global Alliance, to continue searching for better treatment options for ECD and supporting the ECD community.\r\n\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"2012\"]\r\n\r\nEva Melissa Barnett- Daddy's Song\r\n<\/strong><\/a>The daughter of an ECD patient has written and performed a song about her dad.\r\n\r\nECD WaltComer Video\r\n<\/strong><\/a>Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.\r\n\r\nBlind newlyweds take life in stride despite challenges\r\n<\/strong><\/a>An article about Kit, an ECD patient, and her husband, Rich.\r\n\r\nNIH Rare Disease Day 2012\r\n<\/strong><\/a>NIH film documenting Rare Disease Day at the NIH on February 29, 2012. The first part of the video shows an ECD display and one of our members talking with Dr. Juvianee Estrada-Veras.\r\n\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"2011\"]\r\n\r\nThe former Bradford doctor having to adapt to a life-changing condition\r\n<\/strong><\/a>Describes the exercise program, and related benefits, of one ECD patient, a former doctor who lives in the UK.\r\n\r\nA Rare Disease Leaves a Man Feeling Blessed\r\n<\/strong><\/a>An inspirational first-person account from someone who is living with ECD.\r\n*A version of the \"A Man Blessed<\/a>\" story from above that does not require a subscription to the newspaper.\r\n\r\nErdheim-Chester Patient Gets Lungs\r\n<\/strong><\/a>A short article appeared in the Japanese news media in September 2011. It states that the first lung transplant to an Erdheim-Chester Disease patient occurred at Okayama University Hospital in Japan.\r\n\r\nAngel Hearts Launches in Seymour\r\n<\/strong><\/a>An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit organization called, 'Angel Hearts'. The organization is dedicated to helping families who are in need because of medical conditions, including illness and injury.\r\n\r\nPrescott Valley woman's rare disease triggers fundraiser for research\r\n<\/strong><\/a>An article about a patient and her husband, living in Arizona, who are working to help raise awareness of ECD and fund ECD research.\r\n\r\nFirst Annual Gary Brewer Memorial Run\r\n<\/strong><\/a>A local news story about a high school student who is working to raise money for ECD research.\r\n\r\nPOKIN AROUND: Cottleville, Missouri couple blindsided by rare, deadly disease\r\n<\/strong><\/a>A local news story about a couple in Missouri who are learning to cope with Erdheim-Chester Disease.\r\n\r\nAlmost Alone: Jefferson County man is one of the few with Erdheim-Chester Disease\r\n<\/strong><\/a>A local news story about a Hillsboro, Missouri man and his journey related to Erdheim-Chester Disease.\r\n\r\nECD Patient Meets Future Husband at a Scuba Dive Event\r\n<\/strong><\/a>A news story about a young woman with Erdheim-Chester Disease (see story below) who met her future husband at a scuba dive event.\r\n\r\nECD Patient Interview: Long road to diagnosis for a doctor with a rare condition\r\n<\/strong><\/a>A news story from the Yorkshire Post about a doctor who has been diagnosed with Erdheim-Chester Disease. He discusses his experiences in living with ECD.\r\n\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"2009\"]\r\n\r\nECD Patient Learns to Scuba Dive\r\n<\/strong><\/a>A story about a young woman with Erdheim-Chester Disease who has been blinded by the disease. In spite of this, she learned to scuba dive.\r\n\r\n[\/accordion-item]\r\n\r\n[\/accordion]\r\n\r\nhttps:\/\/www.erdheim-chester.org\/news\/noah-finds-courage-purpose\/","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-785","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/pages\/785","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=785"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/pages\/785\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/20218"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=785"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Chowdhury-Family-300x200.jpeg\")
<\/a>A Ray of Hope Amid the Sorrow<\/a> <\/strong>\r\nThe diagnosis of a rare disease is punctuated by the gift of life, from an ECD spouse perspective.\r\n\r\nA Spiritual Journey Through ECD<\/a><\/strong>\r\nThe journey to a diagnosis can be stressful for the entire family. Positive support is critical to a patient\u2019s outlook and response to the news. Despite the effects of COVID and the rarity of his newly found disease, William Dean finds his path and fights to stay strong for his family. \u2013\u00a0By William Dean<\/em>\r\n\r\nWalking With Hope<\/a>\r\n<\/strong>\"I studied everything I could about ECD and thought I had a death sentence coming very soon.\" - by Hugh Welborn.\r\n\r\nDifficult Journeys Lead to Beautiful Destination \u00a0 <\/a><\/strong>\u00a0\r\nI did every test under the sun to find out what it wasn't.\u00a0 Finally, an answer;\u00a0 Erdheim-Chester Disease (ECD).\r\n\r\nFighting the Ultra Rare Erdheim-Chester Disease<\/a><\/strong>\r\nGerry Gallick shares his journey to an ECD diagnosis and how he has coped with the new normal.\r\n\r\nI Am Rare<\/a>\r\n<\/strong>\u2026after ten years of \u201cWhat is going on, and I really am not a whiny woman,\u201d I was diagnosed with Erdheim-Chester Disease.\r\n<\/strong>\r\n\r\nMedical Miracle \u2013 The Result of a Mother\u2019s Love<\/a>\r\n<\/strong>She had always wanted to be a mother, so it was a dream come true. \u00a0On the other hand, with all of her health issues how would it ever work.\r\n<\/strong>\r\n\r\nHope Past the Loss\u00a0<\/a>- English and Italian Versions<\/a><\/strong>\u00a0<\/strong>\r\n<\/span>Losing her husband to\u00a0Erdheim-Chester disease does not stop this caregiver from having hope for others still fighting.\u00a0\u00a0<\/span>By Maria Assunta\u00a0Di\u00a0Pietro<\/span><\/i>\u00a0<\/span>\r\n\r\nRare Disease & Care in Italy - English and Italian Versions<\/a>\u00a0\r\n<\/strong>An\u00a0Erdheim-Chester Disease family reports on the state of healthcare in a large region of Italy.\u00a0\u00a0<\/span>By Mariangela Melino<\/span><\/i>\u00a0<\/span>\r\n\r\nWe Watch and Wait \u2013 Living with Rare Disease\u00a0<\/a>\u00a0\r\n<\/strong>Erdheim-Chester disease is not the same for all patients.\u00a0<\/span>By Tina Koslosky<\/span><\/i>\u00a0<\/span>\r\n\r\nRare Disease Baffled Medics<\/a>\u00a0\r\n<\/strong>Written by an ECD family with the intention to raise awareness. \"Special thanks to Dr.\u00a0Roei Mazor\u00a0for his invaluable contributions to this article for its medical accuracy, and for his unwavering care and treatment of my dad over the past four+ years.\" - Michael Friedlander<\/span>\u00a0<\/span>\r\n\r\nFootball, Family, and Rare Disease<\/a><\/strong>\r\nFor many, fall time means pumpkin spice and sweaters, for others it\u2019s the pigskin and gridiron: Football!\r\n\r\nRelay for Life in Nashville<\/a><\/strong>\r\nJoe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all those curious about ECD.\r\n\r\nFighting Rare Disease as a Family<\/a>\r\n<\/strong>After nearly 10 years of struggling, \u201cThen the real stuff started to kick in\u2026\u201d\r\n\r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/ECD-Lofaro-and-Reddy-SU-1-300x160.jpg\")
<\/a>Teamwork key to treating patient\u2019s rare blood cancer<\/a>\r\n<\/strong>Former sports journalist Joe Lofaro has little memory of Oct. 23, 2015, when his son Daniel loaded him into a car at his Martin, Tennessee, home and said, \u2018Come on, Dad, we\u2019re going for a ride.\u201d\r\n\r\nConnecting Caregivers with Resources and Support<\/a>\r\n<\/strong>\u201cWhen you become very good at caregiving, you have to understand the difference between a 'laugh cry' and a 'sad cry',\u201d he said as he addressed a room of people going through similar situations.\r\n\r\nOn Rare Disease Day, Experts Say \u2018DON\u2019T GIVE UP\u2019\r\n<\/a><\/strong>Rare Disease Day raises awareness of disorders that affect very few of us.\u00a0 An ECD patient in Washington shares her story of fighting to save her own life.\r\n\r\nTennessee ECD Patient Trying to Beat Rare Disease<\/strong>\r\n<\/a>Joe Lofaro raises awareness for Rare Disease Day in his community by sharing his story of battling this rare disease, no matter the obstacles.\r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4]\r\n\r\n[accordion-item title=\"2017\"]\r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/07\/Caity_ornament-e1516302632831-113x150.jpg\")
<\/a><\/td>\r\n![\"Dawn](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/01\/Smith-Dawn-2.jpg\")
\r\n\r\n