{"id":58661,"date":"2018-07-26T12:00:56","date_gmt":"2018-07-26T16:00:56","guid":{"rendered":"https:\/\/rarediseases.org\/giving-spotlight-honoring-mom-moms-legacy-with-research-and-awareness\/"},"modified":"2022-12-01T11:56:56","modified_gmt":"2022-12-01T16:56:56","slug":"giving-spotlight-honoring-mom-moms-legacy-with-research-and-awareness","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/giving-spotlight-honoring-mom-moms-legacy-with-research-and-awareness\/","title":{"rendered":"Giving Spotlight:\u00a0 Honoring Mom-Mom\u2019s Legacy with Research and Awareness"},"content":{"rendered":"

\u00a0Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of\u00a0the Yankanich family who has been raising money for Pheochromocytoma research with NORD. After losing her mother, Julie Yankanich and her daughter began raising money\u00a0by hosting bake sales and participating in 5K’s in order to raise money to go towards a dedicated pheo research fund. Once the fund reaches $35,000, NORD will begin the process of issuing a request for pheochromocytoma research proposals.\u00a0<\/em><\/p>\n

Now is your chance to help further research for this rare cancer. Donate to NORD’s <\/strong><\/em>pheo research fund today<\/em><\/strong>!<\/p>\n

\n

Nine-year-old Erin told her mom, \u201cMommy, I hate cancer. Why don\u2019t doctors figure out what causes it?\u201d\u00a0 Her mom said doctors are trying.\u00a0 But that was not enough for Erin.\u00a0 She and her best friend set out to raise money<\/a> so that more families do not have to suffer.<\/em><\/strong><\/p>\n

This will be Erin and her family\u2019s first Thanksgiving without her grandmother, Mom-Mom, gone too soon after battling pheochromocytoma<\/a> (pheo), a rare type of cancer.\u00a0 She went undiagnosed for 10 years after being told her symptoms were extended menopause and anxiety.\u00a0She died this year at only 60 years old.<\/p>\n

\"julie-yankanich-5\"\u201cMy family is willing to tell our story. My mom would want us to do that, even though she was very quiet about [her cancer] when she was alive,\u201d said Julie, Erin\u2019s mom.\u00a0 Julie hopes that by sharing their experience, it will raise awareness that \u201ccould literally save someone\u2019s life and alleviate their symptoms.\u201d<\/p>\n

Julie remembers five years ago when her mom was diagnosed.\u00a0 \u201cShe did not want the [grand]kids to know.\u00a0 She did not want to scare them.\u00a0 We knew a lot of people who had had cancer.\u201d<\/p>\n

Earlier this year, on a trip to Mexico, her mom experienced a medical complication.\u00a0 Julie remembers, \u201cMy kids were here with me, seeing me on the phone and being upset, so we told them that she had cancer and that it had gotten painful and she needed to come home.\u201d<\/p>\n

Over the next few months, as her mom was in pain and stayed in bed, the grandkids started to withdraw because, as Julie put is, they did not understand what was going on and why their grandmother was no longer getting up.<\/p>\n

A turning point came after a hard conversation with Erin.\u00a0 Julie recalls, \u201cMy daughter is the oldest of six grandkids, and she and my mom were very close.\u00a0 I\u2019m the oldest of her daughters. One night, I was talking to my daughter and crying to her.\u00a0 She asked, \u2018Is Mom-Mom going to die?\u2019 and I said that I think she is.\u201d<\/p>\n

Erin said, \u201cMommy, I hate cancer. Why don\u2019t doctors figure out what causes it?\u201d\u00a0 Julie told her doctors are trying.\u00a0 But that was not enough for Erin and she wanted to do something.\u00a0 She and her best friend, Sophia, turned their hobby of baking cakes into a fundraiser.<\/p>\n

\u201cI want to do a bake sale and do it to raise money for Mom-Mom,\u201d she told her mother.\"julie-yankanich-19\"<\/a><\/p>\n

For an entire week, the girls baked cakes and cupcakes and froze them until the night before the bake sale, when they decorated them with frosting.\u00a0 Julie remembers it was a family affair: her niece made cookies.<\/p>\n

From there, the fundraiser snowballed.\u00a0 Julie remembers how people wanted to help.\u00a0 Friends and neighbors called to ask where they could make a donation. \u201cIt happened so quickly, so we started looking online for where to put the money.\u201d\u00a0<\/strong><\/p>\n

She looked up rare cancer and came upon NORD. \u00a0Julie said, \u201cNORD was very responsive and I remember thinking I like the fact they are looking at many different types of diseases. With my mom\u2019s cancer being a NET cancer (neuroendocrine cancer), you can\u2019t just look at one cancer.\u00a0 So, I thought if they have a research fund for pheo and have general research going on for rare things, maybe we have a better chance of finding a cure.\u201d<\/p>\n

\u201cNow we feel like actually a good way to remember her every year,\u201d Julie continued. \u201cWe will do the bake sale.\u00a0 My daughter is a runner and maybe we will do a 5K. We would love it if one day there was some protocol to catch this earlier.\u201d<\/p>\n

\"\"<\/a>Knowing what the family knows now, Julie wants to reach more doctors and make detection easier. \u00a0After the diagnosis, her mother\u2019s doctor said he had never treated anyone with pheo in his entire career, and it was only something in medical textbooks.\u00a0 \u201cHe felt awful,\u201d she said. \u201cI think if there had been a better way to detect this\u2026 my mom would be ok.\u201d<\/p>\n

According to NORD\u2019s genetic counselor, Marsha Lanes, who is part of NORD\u2019s team working to develop new educational materials for physicians and medical students, pheochromocytomas are known to be difficult to diagnose.\u00a0Surgery to remove the adrenal gland(s) is the treatment for\u00a0pheos. \u00a0To achieve good blood pressure control prior to surgery, the National Cancer Institute states<\/a> that alpha-blockers are used to control blood pressure in patients with pheochromocytoma. Beta-blockers may be used if blood pressure can not be controlled with alpha-blockers or to keep the heart rate normal. Alpha blockers are always used before beta-blockers.<\/p>\n

Blood and urine analysis can confirm a diagnosis<\/a> of pheochromocytoma by detecting elevated levels of catecholamines or its metabolites in the urine and blood (plasma). A specialized test, the clonidine suppression test, may be performed to rule out other causes of elevated catecholamines.<\/p>\n

\"julie-yankanich-3\"\u201cPeople [with pheos] can live long full lives.\u00a0 With my mom, it never got detected.\u201d\u00a0 Julie wants doctors to consider doing a full urine test if they are already planning to do a blood work-up.\u00a0 For her mom, who had always been into health food and exercising, once the cancer had been detected, it was too late.\u00a0 The cancer had metastasized.<\/p>\n

\u201cMy mom was only 60 years old, she was beautiful, she was so well loved in the community and nobody knew she was sick.\u00a0 They didn\u2019t know for so many years that she struggled and couldn\u2019t get out of bed.\u00a0 My sisters and I\u00a0worry about the genetic [component].\u201d<\/p>\n

As for her family, her father now lives by himself, and Julie and her sisters spend a lot of time with him.\u00a0 Her mother had many traditions, especially around the holidays.<\/p>\n

\u201cThe research is really important because it\u2019s rare,\u201d Julie says.\u00a0 \u201cNORD is a great place to donate.\u201d<\/p>\n

Click here to donate to the pheo fund at NORD started by Julie and Erin.<\/em><\/p>\n

If you are interested in making a gift to NORD or in honor of a loved one, please visit our Ways to Donate<\/a><\/em> page.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

\u00a0Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. … <\/p>\n

Continue reading “Giving Spotlight:\u00a0 Honoring Mom-Mom\u2019s Legacy with Research and Awareness”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12055,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505,193],"tags":[866,249,715,723,208,864,865,633,863,862,798,383,867],"class_list":["post-58661","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","category-research","tag-catecholamines","tag-diagnosis","tag-donate","tag-giving-spotlight","tag-marsha-lanes","tag-net-cancer","tag-neuroendocrine-cancer","tag-nord-research-grant-program","tag-pheo","tag-pheochromocytoma","tag-rare-cancer","tag-research","tag-thanksgiving"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58661","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58661"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58661\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12055"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58661"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58661"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58661"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}