{"id":104413,"date":"2025-09-22T07:00:13","date_gmt":"2025-09-22T11:00:13","guid":{"rendered":"https:\/\/cablemanpro.com\/wallstreetpr\/four-families-are-desperate-to-raise-funds-for-their-childrens-paralyzing-disease-104413"},"modified":"2025-09-22T07:00:13","modified_gmt":"2025-09-22T11:00:13","slug":"four-families-are-desperate-to-raise-funds-for-their-childrens-paralyzing-disease","status":"publish","type":"post","link":"https:\/\/cablemanpro.com\/wallstreetpr\/four-families-are-desperate-to-raise-funds-for-their-childrens-paralyzing-disease-104413","title":{"rendered":"Four families are desperate to raise funds for their children\u2019s paralyzing disease"},"content":{"rendered":"<div>\n<p>Four American families are desperate to save their children from a devastating <a href=\"https:\/\/www.foxnews.com\/category\/genetics\" target=\"_blank\" rel=\"noopener\">genetic disease<\/a>. The cure exists \u2014 but it\u2019s up to them to raise $1.15 million to fund a clinical trial.<\/p>\n<p>Each of these families has a child with spastic paraplegia 50 (SPG50), a <a href=\"https:\/\/www.foxnews.com\/category\/health\/medical-research\/rare-diseases\" target=\"_blank\" rel=\"noopener\">rare neurological disorder<\/a> that affects fewer than 100 people in the world.<\/p>\n<p>In an on-camera interview with Fox News Digital, the families spoke about their race against time to secure the treatment. <strong>(See the video at the top of the article.)<\/strong><\/p>\n<p><a href=\"https:\/\/www.foxnews.com\/health\/mother-frantic-save-clinical-trial-could-cure-daughter-treatment-sitting-fridge\" target=\"_blank\" rel=\"noopener\"><strong><u>MOTHER FRANTIC TO SAVE CLINICAL TRIAL THAT COULD CURE HER DAUGHTER: \u2018THE TREATMENT IS SITTING IN A FRIDGE&#8217;<\/u><\/strong><\/a><\/p>\n<p>The families&#8217; goal is to raise $1.15 million by the end of October to start the trial in the U.S. They have set up a nonprofit organization called\u00a0<a href=\"https:\/\/www.jackscorner.org\/\" target=\"_blank\" rel=\"nofollow noopener\"><u>Jack\u2019s Corner<\/u><\/a> to assist with the fundraising efforts.<\/p>\n<p>SPG50 slows down a\u00a0<a href=\"https:\/\/www.foxnews.com\/category\/health\/healthy-living\/childrens-health\" target=\"_blank\" rel=\"noopener\"><u>child\u2019s development<\/u><\/a>, gradually leading to cognitive impairment, muscle weakness, speech impairment and eventually paralysis, according to the National Organization for Rare Disorders.<\/p>\n<p>&#8220;The prognosis varies from person to person, but it\u2019s generally a progressive condition,&#8221; Dr. Eve Elizabeth Penney, an epidemiologist at the Texas Department of State Health Services and medical contributor for Drugwatch, previously told Fox News Digital.\u00a0<\/p>\n<p>&#8220;Children with SPG50 may experience early <a href=\"https:\/\/www.foxnews.com\/category\/health\/nervous-system-health\" target=\"_blank\" rel=\"noopener\">developmental delays<\/a>, muscle weakness and spasticity,&#8221; she went on. &#8220;Over time, the symptoms can worsen, making it hard for affected individuals to walk and perform daily activities.&#8221;<\/p>\n<p>There is no treatment currently approved by the U.S. Food and Drug Administration (FDA) for SPG50. However, one does exist, thanks to Terry Pirovolakis, a father in Canada whose son was diagnosed in 2017.<\/p>\n<p><a href=\"https:\/\/www.foxnews.com\/health\/father-created-drug-save-his-son-from-rare-disease-now-other-families-desperate-get\" target=\"_blank\" rel=\"noopener\"><strong><u>FATHER CREATED A DRUG TO SAVE HIS SON FROM A RARE DISEASE, NOW OTHER FAMILIES ARE DESPERATE TO GET IT<\/u><\/strong><\/a><\/p>\n<p>&#8220;They told us to just go home and love him \u2014 and said he would be paralyzed from the waist down by age 10, and quadriplegic by age 20,&#8221; Pirovolakis told Fox News Digital of his son&#8217;s diagnosis. &#8220;They said he\u2019d never walk or talk, and would need support for the rest of his life.&#8221;<\/p>\n<p>Refusing to accept this outcome, Pirovolakis embarked on a mission to save his son \u2014 he liquidated his savings, met with numerous experts and paid scientists to create a <a href=\"https:\/\/www.foxnews.com\/category\/genetics\" target=\"_blank\" rel=\"noopener\">gene therapy<\/a>.<\/p>\n<p>In March 2022, his son received the gene therapy and is now thriving. Pirovolakis then opened up a Phase 2 study in the U.S., which treated three more children. All have reported that the disease has stopped progressing and their cognition has improved.<\/p>\n<p>Now, the goal is to move into a Phase 3 trial, which would allow more children to be treated \u2014 but because the drug is not yet FDA-approved, the families will need to raise the funds for the trial themselves.<\/p>\n<p>Rebekah Lockard, from Littleton, Colorado, is desperate to treat her 4-year-old, Naomi, who was diagnosed with SPG50 in 2023.\u00a0<\/p>\n<p>Her younger child, Jack, was also diagnosed with SPG50 and received the therapy in a <a href=\"https:\/\/www.foxnews.com\/category\/health\/medical-research\" target=\"_blank\" rel=\"noopener\">previous trial<\/a> due to his younger age.<\/p>\n<p>&#8220;Naomi remains unable to walk and has a wheelchair for mobility, while Jack is moving quickly with the help of a walker,&#8221; Lockard told Fox News Digital. &#8220;Naomi has a few sounds and gestures she uses to communicate, while Jack is sailing ahead with his gestures and his understanding of what we say.&#8221;<\/p>\n<p>&#8220;Each day, we are so thankful that Jack received <a href=\"https:\/\/www.foxnews.com\/health\" target=\"_blank\" rel=\"noopener\">meaningful treatment<\/a> at an early age. And each day, we feel despair that we haven&#8217;t been able to give Naomi the same quality of life.&#8221;<\/p>\n<p><a href=\"https:\/\/www.foxnews.com\/health\/mother-rare-als-touts-miracle-drug-has-stopped-her-disease\" target=\"_blank\" rel=\"noopener\"><strong><u>MOTHER WITH RARE ALS TOUTS &#8216;MIRACLE DRUG&#8217; THAT HAS STOPPED HER DISEASE<\/u><\/strong><\/a><\/p>\n<p>Emma and Dylan Jobsis, from Juneau, Arkansas, have a 4-year-old son, Cade, who was also diagnosed in 2023.<\/p>\n<p>&#8220;Right now, Cade is still able to walk short distances with his walker, but without treatment, we know he will lose that ability,&#8221; Emma Jobsis told Fox News Digital.\u00a0<\/p>\n<p>&#8220;Right now, we live with the daily fear of watching our son lose skills and independence that he\u2019s worked so hard to gain. <a href=\"https:\/\/www.foxnews.com\/category\/health\/healthy-living\/medications\" target=\"_blank\" rel=\"noopener\">Without treatment<\/a>, Cade\u2019s future is one of decline \u2014 eventually losing the ability to walk, to feed himself, and to do the things that make him who he is.&#8221;<\/p>\n<p>Jordan and Cody Medeiros, from Scio, Oregon, were devastated to learn that their 4-year-old son, Lincoln, has SPG50.<\/p>\n<p>&#8220;Since Lincoln\u2019s diagnosis two years ago, SPG50 has slowly taken away his ability to walk safely,&#8221; Jordan Medeiros told Fox News Digital. &#8220;He falls often \u2014 multiple times a day. And he can\u2019t verbalize his pain or frustrations.&#8221;<\/p>\n<p>&#8220;The worst part is that there are eight doses, sitting and waiting to be given to children who so desperately need it.&#8221;<\/p>\n<p>In Susquehanna, Pennsylvania, Jami and Cody Wood welcomed twins in 2022. In August 2025, they were devastated to learn that one of the twins, Mila, had SPG50.<\/p>\n<p>Just three weeks later, Mila took her first steps, a milestone that her parents described as &#8220;bittersweet.&#8221;<\/p>\n<p>&#8220;We know that there\u2019s only one treatment available to her, and without it, she\u2019ll lose that milestone likely in as much time as it took her to gain it,&#8221; Jami Wood told Fox News Digital.<\/p>\n<p>&#8220;Gene therapy is currently the other treatment option for Mila, and this trial is our daughter&#8217;s only chance at stopping the progression of this <a href=\"https:\/\/www.foxnews.com\/category\/health\/medical-research\/rare-diseases\" target=\"_blank\" rel=\"noopener\">terrible disease<\/a>. Without the drug, we will be doomed to slowly watch her slip away.&#8221;<\/p>\n<p>The hope is that after a successful Phase 3 trial, the drug will get FDA approval, which would mean that insurance companies and the government would cover this &#8220;huge burden of cost,&#8221; Pirovolakis told Fox News Digital.<\/p>\n<p><a href=\"https:\/\/www.foxnews.com\/newsletters?cmpid=fnfirstnl\" target=\"_blank\" rel=\"noopener\"><strong><u>CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER<\/u><\/strong><\/a><\/p>\n<p>&#8220;More importantly, it will be on the <a href=\"https:\/\/www.foxnews.com\/category\/health\/health-care\" target=\"_blank\" rel=\"noopener\">newborn screening panel<\/a>, so we will then have a chance of catching and eradicating this disease.&#8221;<\/p>\n<p>Pirovolakis and his team are actively working with the FDA to secure approval for this therapy, but &#8220;the process is anything but simple,&#8221; he said.<\/p>\n<p>The challenge is that the FDA currently applies the same manufacturing standards to small programs like Pirovolakis\u2019 \u2014 which may only serve a few children in the U.S. \u2014 as it does for diseases affecting <a href=\"https:\/\/www.foxnews.com\/category\/health\/healthy-living\/childrens-health\" target=\"_blank\" rel=\"noopener\">hundreds of thousands of kids<\/a>.\u00a0<\/p>\n<p>&#8220;For large-scale conditions, economies of scale help bring down costs \u2014 but in our case, these requirements become nearly impossible to meet,&#8221; Pirovolakis said. &#8220;We need flexibility from the FDA for these ultra-rare conditions.&#8221;<\/p>\n<p><a href=\"https:\/\/www.foxnews.com\/health\" target=\"_blank\" rel=\"noopener\"><i><strong><u>For more Health articles, visit\u00a0<\/u><\/strong><\/i><\/a><a href=\"http:\/\/www.foxnews.com\/health\" target=\"_blank\" rel=\"noopener\"><i><strong><u>www.foxnews.com\/health<\/u><\/strong><\/i><\/a><\/p>\n<p>Anyone interested in learning more about SPG50 and the families\u2019 efforts can visit the\u00a0<a href=\"https:\/\/www.jackscorner.org\/\" target=\"_blank\" rel=\"nofollow noopener\"><u>Jack\u2019s Corner<\/u><\/a> website.<\/p>\n<p>Fox News Digital reached out to the FDA for comment.<\/p>\n<\/div>\n<p><a href=\"https:\/\/www.foxnews.com\/health\/families-race-against-time-raise-funds-childrens-paralyzing-disease\">Source &#8211; https:\/\/www.foxnews.com\/health\/families-race-against-time-raise-funds-childrens-paralyzing-disease <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Four American families are desperate to save their children from a devastating genetic disease. The cure exists \u2014 but it\u2019s up to them to raise [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"rop_custom_images_group":[],"rop_custom_messages_group":[],"rop_publish_now":"initial","rop_publish_now_accounts":{"twitter_2902945987_2902945987":""},"rop_publish_now_history":[],"rop_publish_now_status":"pending","footnotes":""},"categories":[16563],"tags":[],"stock_ticker":[],"class_list":["post-104413","post","type-post","status-publish","format-standard","hentry","category-market-news","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Four families are desperate to raise funds for their children\u2019s paralyzing disease - Wall Street PR<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cablemanpro.com\/wallstreetpr\/four-families-are-desperate-to-raise-funds-for-their-childrens-paralyzing-disease-104413\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Four families are desperate to raise funds for their children\u2019s paralyzing disease - Wall Street PR\" \/>\n<meta property=\"og:description\" content=\"Four American families are desperate to save their children from a devastating genetic disease. 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