https://www.macpacfoundation.org/blog daily 0.75 2021-02-02 https://www.macpacfoundation.org/blog/25-for-madisons-25th-also-hi monthly 0.5 2020-11-04 https://www.macpacfoundation.org/blog/19-dos-and-donts-for-interacting-with-people-with-disabilities-4ydxt monthly 0.5 2020-12-23 https://www.macpacfoundation.org/blog/what-its-like-to-have-medical-trauma monthly 0.5 2021-02-03 https://www.macpacfoundation.org/blog/tag/do%27s+and+don%27ts monthly 0.5 https://www.macpacfoundation.org/blog/tag/marissa+mclaughlin monthly 0.5 https://www.macpacfoundation.org/home daily 1.0 2020-11-04 https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5f761f2825313076997bb159/1604350756181/Scan%2B6.jpg Home - What is HBSL? Hypomyelination with brainstem and spinal cord involvement and leg spasticity (HBSL) is a rare neurological disease in the leukodystrophy family. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5f761fec0e79de04d5bf9ca5/1604353015871/ Home - Research Research for HBSL is being lead by Dr. Vanderver, Dr. van der Knapp, and Dr. Taft. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5f761fc3dc3ed4794a5c3ba3/1604351875688/IMG_1285.JPG Home - Support for families We strive to support families in the endeavor of receiving necessary medical equipment and treatment. https://www.macpacfoundation.org/our-story daily 0.75 2020-11-04 https://www.macpacfoundation.org/our-vision daily 0.75 2020-10-14 https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5f87819fa612636f97914352/1602716113739/IMG_6552.JPG Our Vision - Communication, discussion, and support. Here at MacPac Foundation, we believe that open discussion and sharing information is crucial to finding a cure for HBSL. We strive to create an open discussion and honest information sharing base, so that patients, caregivers, scientists, doctors, and researchers all have access to the same information. As a family, we also know the hardships and challenges that come with living with a rare disease. Financial support for necessary equipment, treatment, medication, therapies, travel, and appointments can be hard to come by. At MacPac Foundation, we are here to support our researchers and scientists, but also our families. Families affected by HBSL can apply to grants for financial support through MacPac Foundation. — Janice McLaughlin CEO, Founder, Parent of children with HBSL https://www.macpacfoundation.org/donate daily 0.75 2020-11-21 https://www.macpacfoundation.org/the-sisters daily 0.75 2020-11-04 https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5fa2f1cea2e3ca40dddddb64/1604514269862/IMG_5455+2.JPG The Sisters - Marissa McLaughlin Tobias Keene, D.D.S. Hailing from Richmond, Virginia, Dr. Tobias Keene brings a bit of unabashed Southern hospitality to all his patients. He moved to Washington, D.C. over thirty years ago as a freshman at Ivy College. Right after graduation, he attended World University’s School of Dentistry. Before opening Keene Dental in 1994, he worked for free clinics and some of the finest practices in the District. He is part of the 123 Dental Association and stays up-to-date on the latest dental discoveries. When not striving to keep his patients happy and healthy, he’s enjoys hiking with his family in Rock Creek Park. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5fa2f1edfec2054a8bfac21c/1604514319649/IMG_5448+2.JPG The Sisters - Mahrynn McLaughlin At just fourteen years old, Mahrynn is a budding songwriter, singer, pianist, and ukulele player. In addition to being one of the oldest patients with HBSL, Mahrynn is always looking for ways to create more inclusion within the HBSL and Disabled community. Many have called her an inspiration (a compliment she is hesitant to accept) for the ways she continues to thrive in life. Her resilience is perhaps best shown by her time in the equestrian field when she fell off her horse (literally!) and immediately got back on. Even after recovering from a serious concussion, she is still as quick as ever to defend horses and eagerly awaits resuming her dream of riding in the Special Olympics. You can usually find Mahrynn wherever animals are, listening to her favorite singer-songwriters, or expanding her own ever-growing song repertoire. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5fa2f256f9431c4e641fe4e8/1604514404098/IMG_5452+2.JPG The Sisters - Madison McLaughlin Though perhaps most known for her work as an actor (CW’s Arrow and Supernatural, NBC’s Chicago PD, AMC’s Mad Men, TNT’s Major Crimes) Madison McLaughlin is most proud of her role as a big sister. Being only six years old when Marissa’s health suddenly regressed, Madison sprung into action as a sibling caregiver. Now that they’re older, Madison’s commitment as a caregiver hasn’t wavered; regularly bringing her sisters to hospital treatments, procedures, therapies, and surgeries. Her close relationships with all of her sisters has lead Madison to finding her voice as an advocate and ally to the Disabled community — especially those with rare diseases like HBSL. When she’s not working in advocacy, film and TV, or as a board member for the MacPac Foundation, you can usually find Madison on hikes with her rescue dog, Ezra, or watching baking competition shows with her sisters. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5fa2f2266dda6829bc2b0f74/1604514356084/IMG_5449+3.JPG The Sisters - Mallory McLaughlin Tobias Keene, D.D.S. Hailing from Richmond, Virginia, Dr. Tobias Keene brings a bit of unabashed Southern hospitality to all his patients. He moved to Washington, D.C. over thirty years ago as a freshman at Ivy College. Right after graduation, he attended World University’s School of Dentistry. Before opening Keene Dental in 1994, he worked for free clinics and some of the finest practices in the District. He is part of the 123 Dental Association and stays up-to-date on the latest dental discoveries. When not striving to keep his patients happy and healthy, he’s enjoys hiking with his family in Rock Creek Park. https://www.macpacfoundation.org/what-is-hbsl daily 0.75 2020-11-04 https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/5fa2fa2c7af4a96616f18565/1604516413135/37182_150850521623322_2981766_n.jpg What is HBSL? - What is HBSL? Hypomyelination with brainstem and spinal cord involvement and leg spasticity (HBSL) is a condition that affects the brain and spinal cord (central nervous system). As seen on Medline Plus In particular, the condition affects nerves in specific regions (called tracts) within the spinal cord and the brainstem, which is the part of the brain that connects to the spinal cord. HBSL is a form of leukodystrophy, which is a group of conditions that involve abnormalities of the nervous system's white matter. The white matter consists of nerve fibers covered by a fatty substance, called myelin, that insulates the fibers and promotes the rapid transmission of nerve impulses. In HBSL, the nervous system has a reduced ability to form myelin (hypomyelination). In HBSL, early development of motor skills (such as rolling over and sitting) may be normal, but movement problems typically begin within the infant's first year. However, in some individuals, these problems do not appear until adolescence. The characteristic feature of HBSL is muscle stiffness (spasticity) in the legs that worsens over time. Most people with HBSL are unable to walk independently. Other neurological problems in affected individuals can include abnormal side-to-side movements of the eyes (nystagmus), weak muscle tone (hypotonia) in the torso, and mild intellectual disability. Distinct changes in the brains of people with HBSL can be seen using magnetic resonance imaging (MRI). These characteristic abnormalities typically involve specific regions (called tracts) within the brainstem and spinal cord, especially the pyramidal tract, lateral corticospinal tract, and the dorsal column. https://www.macpacfoundation.org/support-for-families daily 0.75 2020-11-04 https://www.macpacfoundation.org/research daily 0.75 2020-11-04 https://www.macpacfoundation.org/macpac-merch daily 0.75 2021-03-13 https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/604d2196f36aae7a6f01cd72/1615667616809/IMG_6072.jpg MACPAC MERCH - MARCH 2021 All items in this collection are pre sale until March 26th 11:59pm. https://static1.squarespace.com/static/5f2cd5a48389194a171bcaf9/t/604d21fc9871fa65bfa9284a/1615667767195/IMG_5933-2.jpg MACPAC MERCH - This is a limited pre-sale. Please allow 4-6 weeks from end of sale for items to begin shipping.