Latest news with #EpidermolysisBullosa
Yahoo
4 days ago
- Health
- Yahoo
Canadian mom's fight for her son with 4 rare diseases: 'I'll keep pushing until someone listens'
Ashley Bergen noticed the blisters on her son William's wrist shortly after he was born. During her pregnancy, she developed preeclampsia, a serious health condition that causes high blood pressure and can cause organ damage, and delivered William via emergency C-section. When the blisters formed where William's hospital bracelet had been, a hospital resident at the Oakville, Ont. hospital immediately told Bergen to go to SickKids hospital in Toronto. William remained hospitalized for a week before being transferred to SickKids, where doctors diagnosed him with Epidermolysis Bullosa (EB), a group of rare hereditary skin diseases in which the body is unable to form the proteins needed to keep the skin strong. People with EB are sometimes referred to as "butterfly children" because they have extremely fragile skin — like a butterfly's wing — and can develop blisters and sores just by touch. It's estimated that there are approximately 300 to 500 people in Canada living with EB. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. 'They came back and told us that he had Epidermolysis Bullosa (EB). As a 19-year-old new mom, I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him up. Babies scratch themselves and rub their eyes, so he had a lot of blisters and wounds. My learning curve was quick,' said Bergen, now 35, in an interview with Yahoo Canada. The Niagara region-based mom learned that children with EB have such delicate skin that they require special clothing, bedding and more. 'I knew the condition made him fragile but I refused to keep him in a bubble, adjusting only when necessary,' she said. 'For 14 years, aside from uncomfortable wounds, and strange stares and comments from strangers, he lived like any other kid." ... I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him upAshley Bergen Everything started to change for Bergen's family in 2022. In April of that year, Bergen noticed that William was suddenly losing weight and muscle that made it difficult to perform simple tasks, like putting on his backpack or getting out of bed. 'Trying to get attention from the medical system was difficult because nobody wanted to listen,' she said. Bergen says she showed her doctors photos of her eldest son taken only a few months apart that showed a marked difference in his appearance. William, now 16, was referred to an orthopedic surgeon, who quickly escalated the case to a neuromuscular and neurometabolic disorder specialist in Hamilton, Ont.. And then came a wave of rare medical diagnoses. Within a year, William was diagnosed with scoliosis, a musculoskeletal condition, and Myasthenia Gravis (MG) an autoimmune disorder that causes fatigue and upper body weakness and impacts the muscles used to make facial expressions, swallow, chew, speak and breathe. WIlliam was also diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID), a lesser known eating disorder in which people restrict what they eat not because they're afraid of gaining weight, but because they have an aversion to the texture or smells of different foods. Although William had always faced challenges, by the time he entered grade 10, he was a different child. Bergen said she's seen first-hand the need to support medically-complex children after what she described as a "near-fatal" event at a hospital. William spent most of 2024 in hospital due to his deteriorating health. He was categorized as "failure to thrive" due to his low body weight and muscle weakness caused by MG. Bergen said William was so weak, he couldn't lift a cup of water to his face. Although he required BiPAP (bilevel positive airway pressure) while he slept, his skin condition made it too painful for him to wear a mask. Combined with his scoliosis impacting his chest cavity and ability to breathe and expel carbon dioxide, he faced tremendous challenges just to be able to breathe comfortably. Bergen said her experience with the hospital was frustrating. William had initially been denied access to its pediatric complex care program because, allegedly, his case was not "complex enough." Eventually, he was accepted into complex care, which provides treatment through a coordinated plan between healthcare providers across different specialties while involving patients and their families. Communication between parents and healthcare providers is supposed to be a key tenant of the program — but Bergen said this wasn't her experience. According to Bergen, things escalated when William was admitted to the Pediatric Intensive Care Unit after she left the hospital to tend to her younger son. 'His oxygen needs had skyrocketed. I dropped everything and rushed back. When I arrived, he was struggling with a full oxygen mask,' she said. The next day, Bergen said William's CO2 levels had risen to an alarming level. 'No one had called me. My son had been calling for me and no one had told me.' Bergen said the incident left William traumatized. 'The doctors wanted to test how he did on room air, but he was terrified. He cried every time they tried to take his mask off,' she explained. 'Even today, William does everything he can to avoid ever going through that again.' It has taken everything I have to fight and I'll keep pushing until someone listensAshley Bergen Bergen faced a new challenge when it was time for William to be discharged: accessing home care. Initially, William was deemed ineligible for home care. It was only through Bergen's relentless advocacy, along with an occupational therapist who documented every detail of William's condition, that they finally secured a personal support worker seven days a week. 'It has taken everything I have to fight and I'll keep pushing until someone listens," she said. Although William was approved for specialized at-home support through Special Services At Home (SSAH), Bergen said she was told there was no funding available. "The Special Services at Home (SSAH) program helps eligible families of children with a developmental or physical disability pay for services in, or outside the family home. For example, the family can hire someone to help their child learn new skills or improve existing abilities," said an SSAH spokesperson in a statement. "Our government has invested an additional amount of nearly $133 million into the SSAH program which helped to support over 36,400 children with developmental or physical disabilities receive support from the Special Services at Home program in 2023-24. "Our government is also supporting families with children with severe disabilities through our CARE tax credit, which provides up to $8,250 per child in tax relief for eligible childcare expenses." Yahoo Canada followed up with SSAH, however their spokesperson did not address claims that funding had run out in 2024. 'William is 16, and soon he'll be an adult. When that happens, the support he has as a child will go away. And that is an even bigger concern…" Bergen said. "It would be a challenge to raise two healthy kids in today's economy. It's an extremely large challenge with a medically complex child and a regular, happy two-year-old.' To make ends meet, Bergen works two roles at YMCA, while also pursuing higher education to expand her career options. 'The financial struggles have gone on for years, and it's only gotten worse as William's needs have increased,' she said. Recognizing this hardship, Bergen's colleague, Theresa Ganton, helped her start a GoFundMe page to help ease some of the financial burden. Bergen estimates she spends approximately $17,000 out of pocket each year to pay for things like medications and physiotherapy equipment. William requires entreal feeding equipment (he receives nutrients via feeding tube) and will require a motorized wheelchair in the future. The system helps in some in other ways, it just doesn't. Thanks to the GoFundMe, Bergen has been able to offset some of the costs to care for William at home. She was even able to access an adaptable tricycle to help William remain mobile and enjoy time outdoors with his brother. He was invited to participate in the DEBRA Canada Ride for EB, an annual bike ride to raise funds and awareness for children and families impacted by the rare condition. "The system helps in some ways,' she says, 'but in other ways, it just doesn't.' The severity of William's condition cannot be ignored but Bergen is sure that they will fight till the very end. 'I want my kid to prove everyone wrong. I want him to be the one that has stood up for not only him, but for other kids. I want him to be 40 and sitting at that table at the hospital telling his story about how he didn't give up.' In the face of challenges, Bergen and William find strength in each other. When someone recommended placing William in a specialized care home, Bergen dismissed the idea without hesitation. 'I'm not giving up on him. I will never give up on him,' she said. 'William is a unique teenager — not because of his medical condition, but because of his choices,' said Bergen. His joie de vivre shines through in his extraordinary wish for Make-A-Wish: while some kids may want to go to Disney, William wants to visit Mennonite colonies in Mexico. 'I want to give him the gift of travel.' "I want people to see children needing complex care as humans, not numbers — defined by who they are, not their condition," Bergen said.
Yahoo
4 days ago
- Health
- Yahoo
Canadian mom's fight for her son with 4 rare diseases: 'I'll keep pushing until someone listens'
Ashley Bergen noticed the blisters on her son William's wrist shortly after he was born. During her pregnancy, she developed preeclampsia, a serious health condition that causes high blood pressure and can cause organ damage, and delivered William via emergency C-section. When the blisters formed where William's hospital bracelet had been, a hospital resident at the Oakville, Ont. hospital immediately told Bergen to go to SickKids hospital in Toronto. William remained hospitalized for a week before being transferred to SickKids, where doctors diagnosed him with Epidermolysis Bullosa (EB), a group of rare hereditary skin diseases in which the body is unable to form the proteins needed to keep the skin strong. People with EB are sometimes referred to as "butterfly children" because they have extremely fragile skin — like a butterfly's wing — and can develop blisters and sores just by touch. It's estimated that there are approximately 300 to 500 people in Canada living with EB. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. 'They came back and told us that he had Epidermolysis Bullosa (EB). As a 19-year-old new mom, I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him up. Babies scratch themselves and rub their eyes, so he had a lot of blisters and wounds. My learning curve was quick,' said Bergen, now 35, in an interview with Yahoo Canada. The Niagara region-based mom learned that children with EB have such delicate skin that they require special clothing, bedding and more. 'I knew the condition made him fragile but I refused to keep him in a bubble, adjusting only when necessary,' she said. 'For 14 years, aside from uncomfortable wounds, and strange stares and comments from strangers, he lived like any other kid." ... I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him upAshley Bergen Everything started to change for Bergen's family in 2022. In April of that year, Bergen noticed that William was suddenly losing weight and muscle that made it difficult to perform simple tasks, like putting on his backpack or getting out of bed. 'Trying to get attention from the medical system was difficult because nobody wanted to listen,' she said. Bergen says she showed her doctors photos of her eldest son taken only a few months apart that showed a marked difference in his appearance. William, now 16, was referred to an orthopedic surgeon, who quickly escalated the case to a neuromuscular and neurometabolic disorder specialist in Hamilton, Ont.. And then came a wave of rare medical diagnoses. Within a year, William was diagnosed with scoliosis, a musculoskeletal condition, and Myasthenia Gravis (MG) an autoimmune disorder that causes fatigue and upper body weakness and impacts the muscles used to make facial expressions, swallow, chew, speak and breathe. WIlliam was also diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID), a lesser known eating disorder in which people restrict what they eat not because they're afraid of gaining weight, but because they have an aversion to the texture or smells of different foods. Although William had always faced challenges, by the time he entered grade 10, he was a different child. Bergen said she's seen first-hand the need to support medically-complex children after what she described as a "near-fatal" event at a hospital. William spent most of 2024 in hospital due to his deteriorating health. He was categorized as "failure to thrive" due to his low body weight and muscle weakness caused by MG. Bergen said William was so weak, he couldn't lift a cup of water to his face. Although he required BiPAP (bilevel positive airway pressure) while he slept, his skin condition made it too painful for him to wear a mask. Combined with his scoliosis impacting his chest cavity and ability to breathe and expel carbon dioxide, he faced tremendous challenges just to be able to breathe comfortably. Bergen said her experience with the hospital was frustrating. William had initially been denied access to its pediatric complex care program because, allegedly, his case was not "complex enough." Eventually, he was accepted into complex care, which provides treatment through a coordinated plan between healthcare providers across different specialties while involving patients and their families. Communication between parents and healthcare providers is supposed to be a key tenant of the program — but Bergen said this wasn't her experience. According to Bergen, things escalated when William was admitted to the Pediatric Intensive Care Unit after she left the hospital to tend to her younger son. 'His oxygen needs had skyrocketed. I dropped everything and rushed back. When I arrived, he was struggling with a full oxygen mask,' she said. The next day, Bergen said William's CO2 levels had risen to an alarming level. 'No one had called me. My son had been calling for me and no one had told me.' Bergen said the incident left William traumatized. 'The doctors wanted to test how he did on room air, but he was terrified. He cried every time they tried to take his mask off,' she explained. 'Even today, William does everything he can to avoid ever going through that again.' It has taken everything I have to fight and I'll keep pushing until someone listensAshley Bergen Bergen faced a new challenge when it was time for William to be discharged: accessing home care. Initially, William was deemed ineligible for home care. It was only through Bergen's relentless advocacy, along with an occupational therapist who documented every detail of William's condition, that they finally secured a personal support worker seven days a week. 'It has taken everything I have to fight and I'll keep pushing until someone listens," she said. Although William was approved for specialized at-home support through Special Services At Home (SSAH), Bergen said she was told there was no funding available. "The Special Services at Home (SSAH) program helps eligible families of children with a developmental or physical disability pay for services in, or outside the family home. For example, the family can hire someone to help their child learn new skills or improve existing abilities," said an SSAH spokesperson in a statement. "Our government has invested an additional amount of nearly $133 million into the SSAH program which helped to support over 36,400 children with developmental or physical disabilities receive support from the Special Services at Home program in 2023-24. "Our government is also supporting families with children with severe disabilities through our CARE tax credit, which provides up to $8,250 per child in tax relief for eligible childcare expenses." Yahoo Canada followed up with SSAH, however their spokesperson did not address claims that funding had run out in 2024. 'William is 16, and soon he'll be an adult. When that happens, the support he has as a child will go away. And that is an even bigger concern…" Bergen said. "It would be a challenge to raise two healthy kids in today's economy. It's an extremely large challenge with a medically complex child and a regular, happy two-year-old.' To make ends meet, Bergen works two roles at YMCA, while also pursuing higher education to expand her career options. 'The financial struggles have gone on for years, and it's only gotten worse as William's needs have increased,' she said. Recognizing this hardship, Bergen's colleague, Theresa Ganton, helped her start a GoFundMe page to help ease some of the financial burden. Bergen estimates she spends approximately $17,000 out of pocket each year to pay for things like medications and physiotherapy equipment. William requires entreal feeding equipment (he receives nutrients via feeding tube) and will require a motorized wheelchair in the future. The system helps in some in other ways, it just doesn't. Thanks to the GoFundMe, Bergen has been able to offset some of the costs to care for William at home. She was even able to access an adaptable tricycle to help William remain mobile and enjoy time outdoors with his brother. He was invited to participate in the DEBRA Canada Ride for EB, an annual bike ride to raise funds and awareness for children and families impacted by the rare condition. "The system helps in some ways,' she says, 'but in other ways, it just doesn't.' The severity of William's condition cannot be ignored but Bergen is sure that they will fight till the very end. 'I want my kid to prove everyone wrong. I want him to be the one that has stood up for not only him, but for other kids. I want him to be 40 and sitting at that table at the hospital telling his story about how he didn't give up.' In the face of challenges, Bergen and William find strength in each other. When someone recommended placing William in a specialized care home, Bergen dismissed the idea without hesitation. 'I'm not giving up on him. I will never give up on him,' she said. 'William is a unique teenager — not because of his medical condition, but because of his choices,' said Bergen. His joie de vivre shines through in his extraordinary wish for Make-A-Wish: while some kids may want to go to Disney, William wants to visit Mennonite colonies in Mexico. 'I want to give him the gift of travel.' "I want people to see children needing complex care as humans, not numbers — defined by who they are, not their condition," Bergen said.
Yahoo
4 days ago
- Health
- Yahoo
Canadian mom's fight for her son with 4 rare diseases: 'I'll keep pushing until someone listens'
Ashley Bergen is on a mission to help her son, William, who lives with four rare diseases. (Images via Ashley Bergen) Ashley Bergen noticed the blisters on her son William's wrist shortly after he was born. During her pregnancy, she developed preeclampsia, a serious health condition that causes high blood pressure and can cause organ damage, and delivered William via emergency C-section. When the blisters formed where William's hospital bracelet had been, a hospital resident at the Oakville, Ont. hospital immediately told Bergen to go to SickKids hospital in Toronto. William remained hospitalized for a week before being transferred to SickKids, where doctors diagnosed him with Epidermolysis Bullosa (EB), a group of rare hereditary skin diseases in which the body is unable to form the proteins needed to keep the skin strong. People with EB are sometimes referred to as "butterfly children" because they have extremely fragile skin — like a butterfly's wing — and can develop blisters and sores just by touch. It's estimated that there are approximately 300 to 500 people in Canada living with EB. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. Ashley Bergen's son, William, is living with four rare conditions. (Image via Ashley Bergen) 'They came back and told us that he had Epidermolysis Bullosa (EB). As a 19-year-old new mom, I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him up. Babies scratch themselves and rub their eyes, so he had a lot of blisters and wounds. My learning curve was quick,' said Bergen, now 35, in an interview with Yahoo Canada. Advertisement The Niagara region-based mom learned that children with EB have such delicate skin that they require special clothing, bedding and more. 'I knew the condition made him fragile but I refused to keep him in a bubble, adjusting only when necessary,' she said. 'For 14 years, aside from uncomfortable wounds, and strange stares and comments from strangers, he lived like any other kid." ... I didn't know what to expect, and then suddenly, I had this extra-fragile baby. I was afraid to pick him up Ashley Bergen Everything started to change for Bergen's family in 2022. In April of that year, Bergen noticed that William was suddenly losing weight and muscle that made it difficult to perform simple tasks, like putting on his backpack or getting out of bed. William was diagnosed with myasthenia gravis, an autoimmune condition that impacts the muscles in his face and makes it difficult to eat and breathe. (Image via Ashley Bergen) 'Trying to get attention from the medical system was difficult because nobody wanted to listen,' she said. Bergen says she showed her doctors photos of her eldest son taken only a few months apart that showed a marked difference in his appearance. Advertisement William, now 16, was referred to an orthopedic surgeon, who quickly escalated the case to a neuromuscular and neurometabolic disorder specialist in Hamilton, Ont.. And then came a wave of rare medical diagnoses. Within a year, William was diagnosed with scoliosis, a musculoskeletal condition, and Myasthenia Gravis (MG) an autoimmune disorder that causes fatigue and upper body weakness and impacts the muscles used to make facial expressions, swallow, chew, speak and breathe. WIlliam was also diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID), a lesser known eating disorder in which people restrict what they eat not because they're afraid of gaining weight, but because they have an aversion to the texture or smells of different foods. Although William had always faced challenges, by the time he entered grade 10, he was a different child. The hurdles of healthcare Bergen said she's seen first-hand the need to support medically-complex children after what she described as a "near-fatal" event at a hospital. Advertisement William spent most of 2024 in hospital due to his deteriorating health. He was categorized as "failure to thrive" due to his low body weight and muscle weakness caused by MG. Bergen said William was so weak, he couldn't lift a cup of water to his face. Although he required BiPAP (bilevel positive airway pressure) while he slept, his skin condition made it too painful for him to wear a mask. Combined with his scoliosis impacting his chest cavity and ability to breathe and expel carbon dioxide, he faced tremendous challenges just to be able to breathe comfortably. Bergen said her experience with the hospital was frustrating. William had initially been denied access to its pediatric complex care program because, allegedly, his case was not "complex enough." Eventually, he was accepted into complex care, which provides treatment through a coordinated plan between healthcare providers across different specialties while involving patients and their families. Communication between parents and healthcare providers is supposed to be a key tenant of the program — but Bergen said this wasn't her experience. According to Bergen, things escalated when William was admitted to the Pediatric Intensive Care Unit after she left the hospital to tend to her younger son. William was hospitalized throughout 2023 and 2024. He requires a feeding tube to help him gain weight. (Image via Ashley Bergen) 'His oxygen needs had skyrocketed. I dropped everything and rushed back. When I arrived, he was struggling with a full oxygen mask,' she said. The next day, Bergen said William's CO2 levels had risen to an alarming level. 'No one had called me. My son had been calling for me and no one had told me.' Advertisement Bergen said the incident left William traumatized. 'The doctors wanted to test how he did on room air, but he was terrified. He cried every time they tried to take his mask off,' she explained. 'Even today, William does everything he can to avoid ever going through that again.' It has taken everything I have to fight and I'll keep pushing until someone listens Ashley Bergen Bergen faced a new challenge when it was time for William to be discharged: accessing home care. Initially, William was deemed ineligible for home care. It was only through Bergen's relentless advocacy, along with an occupational therapist who documented every detail of William's condition, that they finally secured a personal support worker seven days a week. 'It has taken everything I have to fight and I'll keep pushing until someone listens," she said. Advertisement Although William was approved for specialized at-home support through Special Services At Home (SSAH), Bergen said she was told there was no funding available. A GoFundMe has allowed William to access medical equipment at home. (Image via Ashley Bergen) "The Special Services at Home (SSAH) program helps eligible families of children with a developmental or physical disability pay for services in, or outside the family home. For example, the family can hire someone to help their child learn new skills or improve existing abilities," said an SSAH spokesperson in a statement. "Our government has invested an additional amount of nearly $133 million into the SSAH program which helped to support over 36,400 children with developmental or physical disabilities receive support from the Special Services at Home program in 2023-24. "Our government is also supporting families with children with severe disabilities through our CARE tax credit, which provides up to $8,250 per child in tax relief for eligible childcare expenses." Yahoo Canada followed up with SSAH, however their spokesperson did not address claims that funding had run out in 2024. Advertisement 'William is 16, and soon he'll be an adult. When that happens, the support he has as a child will go away. And that is an even bigger concern…" Bergen said. "It would be a challenge to raise two healthy kids in today's economy. It's an extremely large challenge with a medically complex child and a regular, happy two-year-old.' To make ends meet, Bergen works two roles at YMCA, while also pursuing higher education to expand her career options. 'The financial struggles have gone on for years, and it's only gotten worse as William's needs have increased,' she said. William will participate in an annual bike ride to raise funds for EB. (Image via Ashley Bergen) Recognizing this hardship, Bergen's colleague, Theresa Ganton, helped her start a GoFundMe page to help ease some of the financial burden. Bergen estimates she spends approximately $17,000 out of pocket each year to pay for things like medications and physiotherapy equipment. William requires entreal feeding equipment (he receives nutrients via feeding tube) and will require a motorized wheelchair in the future. The system helps in some in other ways, it just doesn't. Thanks to the GoFundMe, Bergen has been able to offset some of the costs to care for William at home. She was even able to access an adaptable tricycle to help William remain mobile and enjoy time outdoors with his brother. He was invited to participate in the DEBRA Canada Ride for EB, an annual bike ride to raise funds and awareness for children and families impacted by the rare condition. Advertisement "The system helps in some ways,' she says, 'but in other ways, it just doesn't.' The severity of William's condition cannot be ignored but Bergen is sure that they will fight till the very end. 'I want my kid to prove everyone wrong. I want him to be the one that has stood up for not only him, but for other kids. I want him to be 40 and sitting at that table at the hospital telling his story about how he didn't give up.' 'He's human, not a number' In the face of challenges, Bergen and William find strength in each other. When someone recommended placing William in a specialized care home, Bergen dismissed the idea without hesitation. 'I'm not giving up on him. I will never give up on him,' she said. 'William is a unique teenager — not because of his medical condition, but because of his choices,' said Bergen. His joie de vivre shines through in his extraordinary wish for Make-A-Wish: while some kids may want to go to Disney, William wants to visit Mennonite colonies in Mexico. 'I want to give him the gift of travel.' Advertisement "I want people to see children needing complex care as humans, not numbers — defined by who they are, not their condition," Bergen said. Let us know what you think by commenting below and tweeting @YahooStyleCA! Follow us on Twitter and Instagram.
Irish Independent
5 days ago
- Business
- Irish Independent
Louth retailer raises €4,000 across stores for Debra charity
The money was raised collectively from Abker's 10 MACE stores over the past few months through various fundraising events. Debra is dedicated to transforming the lives of people living with Epidermolysis Bullosa (EB), caring for someone with EB, or bereaved by EB, through care, research and advocacy. EB is an incurable and painful genetic skin condition, also known as 'Butterfly Skin', as the skin of people with EB breaks and tears at the slightest touch. Debra acts as a positive force for all those living with EB and all those whose lives have been impacted by EB by listening and providing support. Abker, and his staff, used the opportunity of the 10-year anniversary event at his MACE store in Wheaton Hall Drogheda to hand over the cheque to the head of philanthropy at Debra, Louise Delahunty. Abker said: 'We had a wonderful event to celebrate our 10 years in MACE Wheaton Hall and it was the perfect opportunity to invite Debra to receive the funds raised for the wonderful work they so for people with EB. I want to thank all the team for their tireless work in raising these funds.' MACE Ireland first partnered with Debra last year in April of 2024 and to date have raised over €80,000 in the first year of the partnership. Funds have been raised through the sale of MACE own brand products, instore collection units and various MACE store fundraising events such as ice cream and coffee days for Debra. MACE makes a 10c donation to Debra for every 500ml, 2L, and 5L water bottle purchased, and a 1c donation for selected MACE own brand products.
Yahoo
28-05-2025
- Business
- Yahoo
DEBRA Research and Dermaliq Enter into a Strategic Collaboration to Advance Cutaneous Drug Delivery for Epidermolysis Bullosa
Initial programs will focus on developing innovative topical treatments and drug therapies for wound healing and itch relief, plus prophylactic therapies for people with Epidermolysis Bullosa. Dermaliq's proprietary hyliQ® technology platform enables touchless delivery of novel drug therapies to fragile, sensitive or disease-affected skin. MUNICH and WILMINGTON, Del., May 28, 2025 (GLOBE NEWSWIRE) -- DEBRA Research gGmbH, a global non-profit organization dedicated to advancing research and drug development for those affected by Epidermolysis Bullosa (EB), and Dermaliq Therapeutics, Inc., a clinical-stage dermatology innovator company developing next-generation topical therapies, today announced a strategic, non-exclusive collaboration to advance cutaneous drug delivery into the skin for EB. Initially, the partners will focus on improving wound-healing and anti-itch therapies, plus developing prophylactic therapies for people suffering from EB. As part of the agreement, DEBRA Research has also made a strategic investment in Dermaliq. EB is a group of rare and painful genetic skin disorders characterized by extremely fragile skin, leading to blisters and wounds from even minor friction or trauma. EB significantly affects the daily lives of people living with the condition and is associated with substantial morbidity and mortality over time due to chronic wounds, infections, and complications involving internal organs. It is caused by mutations in one or more genes that encode proteins responsible for maintaining the structural integrity of the skin. While there is currently no cure, novel treatments are being developed to manage symptoms, reduce pain, and improve quality of life. Dermaliq is set to transform therapeutic strategies for skin and wound management in EB. Leveraging its proprietary hyliQ® technology, the company enables targeted delivery of active compounds into the skin without mechanical interference to fragile or wounded tissue. Applied touchless, hyliQ® is designed specifically for conditions like EB, where the skin is exceptionally delicate and prone to blistering or damage from even minimal friction. This innovative approach offers critical therapeutic benefits for patients by delivering effective treatments while preserving the integrity of compromised skin. 'This partnership aligns closely with our mission to accelerate the development of effective, high-impact therapies for people living with EB,' said Dr Christoph Coch MD, Managing Director at DEBRA Research. 'Dermaliq's unique technology platform and clinical pipeline offer a promising approach to overcome the limitations of existing topical treatments, particularly for application on the damaged and fragile skin characteristic of EB. We believe this collaboration will play a pivotal role in advancing transformative therapies and improving both medical outcomes and quality of life for those affected by this devastating condition.' 'We are excited to join forces with DEBRA Research to bring our technology to an area of urgent and unmet medical need,' said Frank Löscher, PhD, CEO of Dermaliq. 'This partnership underscores our shared commitment to addressing the urgent needs of people living with this debilitating disorder. With its unique features and exceptional safety profile, hyliQ® is ideally suited for the touchless topical treatment of disease-affected and damaged skin. We look forward to the impact this collaboration can bring to the EB community and beyond.' About DEBRA Research DEBRA Research is a non-profit organization dedicated to advancing treatments and cures for EB, a rare and life-limiting genetic condition. As the research arm of DEBRA Austria – a patient organization established in 1995 to support individuals living with EB – DEBRA Research collaborates globally with academia, biotech, pharma, patient organizations, and regulatory bodies to drive innovation. DEBRA Research focuses on translational research and clinical development to address the unmet needs of people living with EB. Its goal is to accelerate the discovery and development of treatments improving quality of life, while striving for a future where EB is curable – a 'world without EB.' For more information, please visit and follow us on LinkedIn. About Dermaliq Therapeutics Dermaliq Therapeutics, Inc. is uniquely positioned to revolutionize topical dermatology. With our proprietary hyliQ® technology platform, we are breaking through traditional delivery barriers, enabling for the first time the targeted absorption into skin structures with unmatched bioavailability and cutaneous tolerability. This breakthrough paves the way for first-in-class and best-in-class topical treatments with broad application across dermatology and rare disease indications, offering substantial opportunities for long-term growth and value creation. Dermaliq's pipeline includes clinical stage assets in androgenetic alopecia, alopecia areata and wound healing. For more information, visit Contacts DEBRA Research GmbHDr Christoph Coch, Managing Director Email: info@ Dermaliq Therapeutics, Frank Löscher, CEOEmail: aga@ Media Inquiries MC ServicesDr Cora Kaiser, Dr Johanna KoblerPhone: +49 89 210 2280Email: debra-research@ in to access your portfolio
