Press releases are listed newest to oldest.
ALTIMORE, Maryland, December 13, 2022 - The KBG Foundation, a U.S.-based nonprofit organization working to improve the lives of people with KBG syndrome, is thrilled to announced it has awarded its first Seed Funding grant to Dr. Gholson Lyon, M.D., Ph.D, of the Institute for Basic Research in Developmental Disabilities, who will be conducting research under the Research Foundation for Mental Hygiene, Inc. into the cognitive and behavioral functioning of people with KBG syndrome and the role seizures play in any impairment over time.
“It is fitting that the first grant we award is going to Dr. Lyon. He has been an advocate for people with KBG syndrome for seven years, and we are grateful he has been a member of our Scientific Advisory Board,” said Annette Maughan, CEO and co-founder of the KBG Foundation.
The KBG Foundation’s Seed Funding program was launched in November 2022. Grants of up to $10,000 are intended to expedite projects by supporting investigative research into KBG Syndrome and the ANKRD11 gene or otherwise enabling research to move forward.
“I am very grateful to the KBG Foundation for funding this work to obtain quantitative data regarding the general functioning of children and adults with KBG syndrome, alongside an analysis of whether secondary factors, such as seizure development, somehow alter the trajectory of cognitive development,” Lyon said. “The prior work on this has and continues to be funded by New York State Institute for Basic Research (IBR) in Staten Island.”
Among Lyon’s work is a paper published in August 2022 in the European Journal of Human Genetics, which the Foundation was able to assist with, on the role of videoconferencing and use of artificial intelligence driven facial phenotyping. Lyon has also co-hosted three international summits with Dr. Anastassia Voronova. Two invited researchers to present their recent work pertaining to KBG syndrome, and one brought together researchers and practitioners to develop treatment guidelines.
“In 2022, we received more donations than in the past six years combined. The amazing generosity of our community of families affected by KBG and their own friends and relatives enabled us to launch this program and ensure it is funded for two grant cycles,” said KBG Foundation CEO and cofounder Annette Maughan. “Scientists are out there doing important work. They are giving us hope, not only that treatments are in development, but also that they're attainable in the not-too-distant future. We want to help them along the way."
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at www.kbgfoundation.com, or follow us on Facebook, Twitter and LinkedIn.
ABOUT KBG SYNDROME
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
September 26, 2022
For immediate release
Manchester, Md. - The KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, has contracted with Across Healthcare to launch its first patient registry.
“We are absolutely thrilled to reach this milestone. This registry is a way to collect information about our community in a de-identified way that will create a data pool for researchers interested in learning more about and finding treatments for KBG Syndrome,” said Annette Maughan, co-founder and CEO of the KBG Foundation.
Matrix is Across Healthcare’s platform that connects patients, caregivers, providers and researchers in order to collect data, provide a vast community, and advance toward the goal of finding answers and discovering cures.
“Thanks to more robust fundraising over the past several years, the Foundation was able to sign this contract and take this major step for the KBG Syndrome community,” Maughan said. “We are immensely grateful for our families and their networks who have been so generous.”
When the KBG Syndrome Matrix platform officially launches in the coming weeks, people with KBG Syndrome or their caregivers will be able to answer questionnaires about their symptoms to create the most in-depth cross-section of information about this genetic disorder to date.
The Foundation chose to work with Matrix after interviewing several other companies. In addition to creating a data pool that will be valuable to the research community, the platform has numerous consumer-focused features that will be helpful to patients, who often experience numerous challenges due to KBG Syndrome, rely on a variety of clinicians, and require multiple prescriptions to mitigate the numerous symptoms.
“There is no cure for KBG Syndrome, but we are aware of scientific advances that hold promise–if we can drive research,” Maughan said. “We are looking forward to working with Across Healthcare CEO Jason Colquitt and his team.”
Patients and researchers interested in learning more about the registry may contact research@kbgfoundation.com.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at www.kbgfoundation.com, or follow us on Facebook, Twitter and LinkedIn.
ABOUT KBG SYNDROME
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
Manchester, Md. July 18, 2022--The KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, is happy to announce it has joined Genetic Alliance UK, a leading advocate for fast, accurate diagnosis and access to the best treatment for people with rare diseases.
The KBG Foundation already has strong ties in the UK, as geneticists Dr. Karen Low and Dr. Tazeen Ashraf serve on the Foundation’s Scientific Advisory Board. In addition, approximately 20% of the members in the Foundation’s KBG Syndrome Family Facebook group live in the UK.
“The KBG Foundation is thrilled to be part of the Genetic Alliance UK. We continually look for ways to elevate the awareness of KBG Syndrome and connect more patients with one another as well as spark more interest from the research community,” said KBG Foundation CEO and Co-Founder Annette Maughan. “Genetic Alliance UK is a strong champion in advocating for awareness and legislation that has an impact on the rare disease community.”
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ABOUT GENETIC ALLIANCE UK
Genetic Alliance UK is the largest alliance of organizations supporting people with genetic, rare and undiagnosed conditions in the UK. Its members and the people they support are at the heart of everything they do. Genetic Alliance UK advocates for fast and accurate diagnosis, good quality care and access to the best treatments. The organization actively supports progress in research and engages with decision makers and the public about the challenges faced by the rare disease community. Genetic UK runs two long standing projects, Rare Disease UK and SWAN UK (syndromes without a name).
ABOUT KBG SYNDROME
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Follow us on Twitter, Facebook or LinkedIn.
Contact: Annette Maughan, CEO and Executive Director, KBG Foundation
Email: Annette@KBGFoundation.com
Manchester, Md. July 1, 2022- The KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, announced today that it has been approved as a platinum member of the National Organization for Rare Disorders (NORD), the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States.
“NORD membership is another step the KBG Foundation has taken to strengthen our organization,” said CEO and Co-Founder Annette Maughan. “We have grown a large, engaged community of patients and families, and in the past two years, contributions have increased to the point that we are poised to take action that will help connect researchers to our population. We are excited to work with the community and resources that NORD membership brings.”
The NORD membership provides connections to major rare disease stakeholders, promotional opportunities for the Foundation to drive awareness, educational webinars to help guide Foundation governance, and other benefits exclusive to members. In turn, NORD expects members to uphold high ethical standards and operate with transparency.
"The National Organization for Rare Disorders (NORD) welcomes the KBG Foundation as an official member organization. The KBG Foundation met the high standards and criteria of NORD Platinum level membership and joins our network of more than 300 rare disease member organizations,” said Peter Saltonstall, NORD President and CEO. “As the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States, NORD is proud to support and work alongside our members in improving the lives of those impacted by rare diseases."
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ABOUT THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at www.kbgfoundation.com, or follow us on Facebook and Twitter.
ABOUT KBG SYNDROME
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
BALTIMORE, Maryland, June2, 2022 -With a proclamation signed by Governor Larry Hogan, the State of Maryland has officially recognized June 11, 2022, as KBG Syndrome Awareness Day.
The KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, is thrilled that Maryland recognizes the need to drive awareness of the condition, which is key to entice research into treatments and increase support for people living with the syndrome.
“Thank you to Governor Hogan for recognizing that awareness is so important when it comes to supporting families and finding a treatment for KBG Syndrome,” said Annette Maughan, CEO and founder of the KBG Foundation.
The proclamation notes that the State of Maryland is pleased to join with the KBG Foundation to raise public awareness and understanding. KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at kbgfoundation.com.
Manchester, Md. - May 31, 2022 – KBG Foundation, a U.S.-based nonprofit organisation working to improve the lives of people with KBG Syndrome, is again collaborating with FDNA to grow its Face2Gene platform, a valuable tool that can lead to earlier diagnosis of rare genetic disorders. The platform uses facial analysis technology to make it easier for physicians to recognise clinical signs of KBG Syndrome or other disorders in their patients.
People with KBG Syndrome — a rare genetic disorder that causes a spectrum of health, learning, and behavioural challenges — may submit photos at different ages through a confidential Face2Gene portal. Face2Gene then digitises the information to build its database.
Participating clinicians can use Face2Gene by uploading a photo of their patient, and the Face2Gene application analyses the photo against its database to point to potential diagnoses.
“Years ago, the KBG Foundation was one of the first organisations to work with FDNA to help train the Face2Gene software,” KBG Foundation CEO Annette Maughan said. “We are excited to have this opportunity re-open. When we can help people with KBG Syndrome get diagnosed earlier, it’s better for them to get the care they need.” There is no existing cure or single treatment for KBG Syndrome. Patients today have to address each symptom individually, such as seizures, gastrointestinal problems, developmental delays, behavioural challenges and more.
“In addition, we hope a growing community of people with confirmed diagnoses will continue to draw the attention of researchers who will focus their efforts on developing treatments for KBG Syndrome as a whole,” Maughan said.
People with KBG Syndrome are encouraged to join the Foundation’s closed KBG Syndrome Family Group on Facebook, where they may find support and learn from others with the syndrome as well as request the link to participate in Face2Gene.
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ABOUT FACE2GENE AND FDNA
Face2Gene is a suite of phenotyping applications that facilitates comprehensive and precise genetic evaluations. FDNA, developer of Face2Gene, uses facial analysis, deep learning, and artificial intelligence to transform big data into actionable genomic insights to improve and accelerate diagnostics and therapeutics. With the world’s largest network of clinicians, labs and researchers creating one of the fastest growing and most comprehensive genomic databases, FDNA is changing the lives of rare disease patients. For more information, please visit www.FDNA.com.
ABOUT KBG SYNDROME
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene. It is associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs, and advocating to raise awareness about KBG Syndrome. To learn more, visit kbgfoundation.com. Follow @KBGFdn on Twitter.
BALTIMORE, Maryland, May 31, 2022 - Dr. Gholson Lyon to host the second Summit for KBG Syndrome
On June 7, 2022, Dr. Gholson Lyon, a member of the KBG Foundation Scientific Advisory Board, will host his second online summit for clinicians and researchers to develop care protocols and treatment guidelines for people with KBG Syndrome, a rare genetic disorder.
In March 2022, Lyon held the first-ever summit that brought together physicians and researchers to talk about the multi-faceted ways people with KBG Syndrome need coordinated care among numerous specialties.
“I was encouraged by the first summit, and there is definitely a desire for doctors to learn more to help their patients,” Lyon said. “The more the research and clinical communities collaborate, the better the outcomes will be for people living with KBG Syndrome.” Researchers and clinicians interested in participating can register by emailing Lyon directly at gholsonjlyon@gmail.com.
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. There is no single cure, and patients require coordinated care among numerous specialists: cardiologists, endocrinologists, otolaryngologists (ENT), psychiatrists, neurologists, gastroenterologists, psycho- or behavioral therapists and more.
The KBG Foundation sponsors a Facebook page, KBG Professionals Group, which allows clinicians and researchers to pose questions or share information, and the Foundation's site administrators can serve as a conduit to patients for them.
ABOUT GHOLSON LYON
Dr. Lyon is a psychiatrist and lab head at the Institute for Basic Research in Development Disabilities and a professor at the Graduate Center, City University of New York. His paper, KBG Syndrome: Prospective Videoconferencing and Use of AI-driven Facial Phenotyping in 25 New Patients, was published in November 2021.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at kbgfoundation.com.
BALTIMORE, Maryland, April 27, 2022 - Manchester, Maryland-- KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, announced today that it has completed a major rebranding. The new logo and style guide for the foundation features bright colors and the helix of their trademarked ribbon.
“For years, The KBG Foundation Board of Directors has been looking at rebranding to strengthen the connection between the Foundation and KBG Syndrome. This new logo makes it very clear: We are here for the KBG Syndrome Families,” said KBG Foundation CEO Annette Maughan.
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
The logo was created over the past few months as a part of the collaborative effort of the KBG Foundation’s new marketing team. The new logo is an evolution of the previous logo and incorporates elements of bright colors. The color palette keeps the signature red of the foundation while bringing in bright colors of blue, yellow, green and orange.
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ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome.
Press Contact:
Annette Maughan, CEO and Executive Director, KBG Foundation
Email: Annette@KBGFoundation.com
Web: www.kbgfoundation.com
Twitter: https://twitter.com/KBGFdn
Facebook: https://facebook.com/KBGFdn
Instagram: @KBGfdn
ALBERTA, Canada, April 6, 2022 - Exciting work is happening in Alberta, Canada. Dr. Anastassia Voronova, a member of the KBG Foundation Scientific Advisory Board, conducts research into ANKRD 11 mutations. Voronova developed a new pre-clinical mouse model for KBG Syndrome research.
She is currently researching how ANKRD11 mutations alter heart development and function in the mouse model, how atypical behaviors arise from ANKRD 11 mutations in the nervous system, and, ultimately, how the function of ANKRD11 can be rescued via therapeutic interventions
Voronova is an assistant professor at the University of Alberta, where she holds a Canada Research Chair in neural stem cell biology. She is the 2022 winner of the Jordi Folch-Pi Award from the American Society for Neurochemistry, which recognizes outstanding young investigators who show a high level of research competence and originality.
She also co-led a 2021 study into the role of ANKRD11 in skull development.
Watch her introduce her work and lab in this video and read more about the Voronova Lab and Dr. Voronova’s research.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome.
Press releases are listed newest to oldest.
BALTIMORE, Maryland, September 24, 2021 - Our newest changes to the KBG Board!
The KBG Foundation is announcing, with the heaviest hearts, the departure of our AVP of Marketing, Kylie Zehnder, our Creative Director, Brianna Dose and Board Member Anik Gibeault.
The KBG Foundation would like to thank these three individuals for their dedication and work for our families. Our board wishes them the best in their future endeavors.
We would also like to invite our board and families to welcome our new VP of Marketing, Caleb Senger, and Creative Director, Taylor Maughan, appointed to finish the terms of our departed members.
Caleb is attending McDaniel College with a major in Marketing. He has worked behind the scenes with the KBG Foundation since 2019, assisting with events, providing support, and being a passionate advocate for ADHD and KBG Syndrome. On joining the board, Mr. Senger said, “It brings me joy to see how we can connect these families with each other through this group, I hope to bring a sense of enthusiasm and unity to the KBG Marketing team.”
Throughout Caleb’s high school career, he found a love for wrestling at Manchester Valley High School, and during this period, he discovered the KBG Foundation. Mr. Senger loved working with his teammates and hopes to bring that same sense of energy to his work for our families.
Taylor Maughan is a current student at Manchester Valley High School, with a large following on the app TikTok. She is passionate about creating content online and engaging people in a happy and friendly way. Taylor has lived with her KBG brother her entire life, being a strong and fiery advocate for his awareness and treatment. She has been an accomplished artist and graphic designer for several years.
Currently a junior, and as an underclassman, Taylor was engaged with many of her schools extracurriculars activities, particularly theatre, cheerleading, and the mentor program: Sources of Strength.
“While I am sorry to see some our most proactive members leave,” Annette Maughan, CEO, said, “I understand the personal decisions to do so. Living with KBG Syndrome can be emotionally and physically very draining.” Mrs. Maughan concluded with; “At the same time, I am excited to see the enthusiasm and influx of youthful ideas the new members of our board can bring to the KBG Foundation.”
A warm welcome to our new KBG board members, and a sincere thanks to our departing friends.
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ABOUT THE KBG FOUNDATION
The KBG Foundation is an international nonprofit affiliate organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about the syndrome.
Press Contact:
Annette Maughan, CEO and Executive Director, KBG Foundation
Email: Annette@KBGFoundation.com
Web: www.kbgfoundation.com
September 07, 2017 10:11 AM Eastern Daylight Time
MANCHESTER, Md.--(BUSINESS WIRE)--Today, KBG Foundation announces its partnership with Boston-based FDNA to accelerate precision medicine and grow the number of confirmed KBG global cases. Clinicians working with the KBG Foundation helped to train FDNA’s facial analysis technology, Face2Gene, to better recognize the clinical signs of KBG Syndrome in patients. The results from this work are now being made available to experts globally to better diagnose and treat patients suffering from KBG.
KBG Syndrome is a rare disease caused by a mutation in the ANKRD11 gene, resulting in distinctive facial features and developmental delays. As of 2013 there were 60 confirmed cases of KBG worldwide; however with its collaboration with FDNA, the KBG Foundation has seen an increase in syndrome cases, reaching 200 (currently submitting to the IRB). The typical diagnostic journey for this and other rare diseases often takes years, but with Face2Gene’s deep learning technology, signs of the disorder can be pinpointed within minutes.
“KBG patients typically receive a general developmental delay diagnosis, but getting an accurate, early diagnosis can lead to better therapy paths and educational services,” said Annette Maughan, Co-Founder and CEO of KBG Foundation. “We’re thrilled to be able to better diagnose these patients without a lengthy diagnostic journey with the help of FDNA’s advanced technology. It’s an important step forward in improving the quality of life and helping those that have gone undiagnosed until now.”
While there are currently no drug treatments available for those with KBG Syndrome, through this effort both KBG Foundation and FDNA are opening the door for orphan drug development. Clinicians across the globe have banded together to assemble enough data, expertise and understanding to make moving forward on development a real possibility. The earlier the diagnosis, the greater treatment potential these patients will have for a lessened developmental deficit.
“Through this collaboration with KBG Foundation, clinicians can use Face2Gene free of charge to better recognize the signs and genetics of patients with rare diseases like KBG,” said Dekel Gelbman, CEO of FDNA. “By embedding our technology with the physician at the moment of diagnosis, we will reduce the stress of the diagnostic journey for KBG patients moving forward.”
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About KBG Foundation
Founded in 2015, the KBG Foundation is an affiliate of the Epilepsy Associate of Utah, dedicated to providing support, assisting in research programs, raising awareness and advocating for all those affected by KBG Syndrome. For more information, please visit www.kbgfoundation.com.
About Face2Gene and FDNA
Face2Gene is a suite of phenotyping applications that facilitates comprehensive and precise genetic evaluations. FDNA, developer of Face2Gene, uses facial analysis, deep learning and artificial intelligence to transform big data into actionable genomic insights to improve and accelerate diagnostics and therapeutics. With the world’s largest network of clinicians, labs and researchers creating one of the fastest growing and most comprehensive genomic databases, FDNA is changing the lives of rare disease patients. For more information, please visit www.FDNA.com.
Contacts
Media Contacts
KBG Foundation
Annette Maughan, 801-566-5949
Annette.maughan@gmail.com
or
FDNA
Blair Curzi, 617-248-0680
BCurzi@cerconebrown.com
Alaina’s Fun Run partners with YMCA in Ohio
BALTIMORE, Maryland, August 1st, 2017 - THIS is KBG Syndrome Awareness in Action!
The KBG Foundation is pleased to be partnering with the Massillon Family YMCA in an effort to raise awareness for KBG Syndrome and related genetic disorders. This event also serves as the inaugural 5k and Fun Run on behalf of the Foundation. The YMCA sponsored Tiger Trot - Run for a Reason - will be held Saturday, September 9th. This unique run, also known as Alaina’s Fun Run for KBG Awareness is inspired by Alaina Zehnder’s journey with KBG Syndrome and focuses less on speed and more on making a positive impact for others affected by KBG Syndrome - patients, caregivers, friends and community.
Alaina’s journey started at birth and, along the way, she faced continuous obstacles. These included digestive complications, ear tubes, cognitive delay, a hole in her heart and, now, seizures. All of these struggles (and more) led to testing, more testing and, finally, a diagnosis - an incredibly rare disease - KBG Syndrome. It was devastating and enlightening at the same time. Luckily, she’s made some great progress in the last few years.
Alaina’s Mom, Kylie, stated; “While it’s difficult to face a rare disease we are grateful to know there are others out there who are dealing with similar issues. Our family maintains that children like her are ...'fearfully and wonderfully made'.* They are perfect. They are the reason why this 5k is happening.” She continued, ”We are humbled by the outpouring of support for our lovely Princess. The community has rallied around her to show her acceptance and love, it’s truly everything beautiful in this world, all because of our little girl. In her honor we invite you to wear your princess attire and have FUN!”
This event, inspired by Alaina and hosted by Massillon YMCA, is KBG Syndrome awareness in action!
WHAT: Run for a Reason
WHEN: Saturday, September 9th, 2017
WHERE: Massillon Family YMCA
131 Tremont Ave SE
Massillon, OH 44646
TIME: 8:30-9:30am: Registration/Pick-Up
10:00am: 5k Run & Walk
Individual Registration: $25
Family (2+) Registration: $50
To pre-register for Run for a Reason and order a t-shirt visit http://www.weststarky.org/alaina2017
REGISTERING:
When you register, please know you'll need to set up an account through the YMCA website and then submit the registration.
Please select the "Massillon Family YMCA" location from the drop-down menu. You can choose the level of your participation with the YMCA but if you want to only register for the 5k and not any other programs, please choose "Program Participant" and go from there!
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ABOUT THE KBG FOUNDATION
The KBG Foundation is an international nonprofit affiliate organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about the syndrome.
ABOUT MASSILLON YMCA
YMCA of Western Stark County is a 501(c)(3) nonprofit serving to strengthen community by nurturing the potential of kids, promoting healthy living for all and fostering and social responsibility.
Press Contact: Kylie Zehnder, KBG Foundation
Phone: (330) 418-8146
Email: Kylie@KBGFoundation.com
Web: www.kbgfoundation.com
Massillon Family YMCA
Phone: (330) 837-5116
Web: www.weststarky.org
*Psalms 139:14