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M-O-OVING THRU’ THE MUD WITH LANDON
Thanks to the generosity of our supporters, Hope for HH has been able to make a huge difference in the lives of individuals and families affected by the many challenges associated with this rare condition. Your donation, in any amount, helps us to continue to increase awareness, provide support and invest in the necessary research to find better treatments and a cure.
• A volunteer program was launched and new volunteers in patient support, database management, and information join the Hope volunteer team
• 5 videos were added to Hope’s Youtube channel on critical topics including: “Epilepsy & Psychiatry;” “Cognition & Memory;” “FMRI Research Update;” “What’s New? HH Treatment and Research” and “ Hope Update”
• US treatment centers was updated on hopeforhh.org to reflect nationwide Institutes with HH treatment and management expertise
• More than 37 Surgical Care bags including comforts for families undergoing HH surgery were distributed (2017 & 2018)
• 11 family journeys were shared through Hope’s “Meet Other Families” blog post series
New educational materials on “HH Myths and Facts”, “Caregivers Guide to HH” and “Understanding HH” were developed and disseminated
• Planning for the 4th International Symposium on Hypothalamic Hamartomas (Sept. 2019) begins
• Comparative Effective Pilot study was launched including 16 collaborators from around the world.
• Epilepsia published Dr. Boerwinkle’s results from the FMRI grant funded by Hope for HH.
• 91 HH families joined the Rare Epilepsy Network and REN published an article titled “Comorbidities of the Rare Epilepsies: Results from Rare Epilepsy Network” in the Journal of Pediatrics with new insights concerning sleep, behavior, anxiety, depression in HH and other rare epilepsies
• Lisa Soeby participated in the Rare Patient Advocacy Summit
• Emma Kane was invited to serve on the EU’s Epilepsy Reference Network.
• Hope disseminated 15 tokens of appreciation to volunteers, caregivers, nurses, care coordinators and physicians as part of a National Random Acts of Kindness campaign
• Grey’s Anatomy, Season 14, ran 2 episodes with a storyline on HH and an innovative new surgery using Focused Ultrasound
• Hope for HH added Brain Awareness, SUDEP Action, National Nonprofit Day to its advocacy day and outreach activities
• Several new fundraising initiatives were launched including “Walk with Colby,” “Arizona Gives”; and “Emma’s Run.” The 2nd Annual OBCC5K doubled it’s fundraising and participants. Moreover, Hope received 2 major donations from the Ronson Foundation and the Young Family. And 10 HH families launch very successful Facebook fundraising campaigns in honor of birthdays and anniversaries
• Hope for HH website is relaunched
• Kathy Jensen joined Hope for HH Board of Directors
• 5 new Medical Advisory Board members joined including Drs. William D. Gaillard, Sam Berkovic, Oliver Oatman, Hiroshi Shirozu and Jie Wu.
• Two research grants were awarded: Novel Rat Model Grant to University of Utah and FMRI Grant to Texas Children’s/Barrows Neurological Institute.
• A comparative effective surgery pilot study working group is formed to evaluate efficacy of surgery outcomes both short and long term across different surgical interventions.
• A special issue on Hypothalamic Hamartomas edited by Drs. Kerrigan and Regis is published in Epilepsia
• Annual Family Forum with families from the US and Europe is planned and executed in Washington DC – the 4th Forum organized by Hope for HH
• Patient Aid is provided to enable families to attend the Hope for HH Family Forum
• Surgical Care bag initiative was launched providing bags filled with comfort items for families undergoing surgery at Texas Children’s, St. Joes (BNI), and Phoenix Children’s Hospital
• Hope’s first Facebook Live program and a webinar on Focused Ultrasound were launched in partnership with the national Epilepsy Foundation
• Lisa Soeby was invited to present at the Arizona Epilepsy Foundation
• Pediatric Epilepsy Surgery Book was published featuring articles by several HH MAB members
• Hope for HH content was disseminated via a partnership with the National Organization for Rare Diseases (NORD)
• Relevant clinical studies were promoted to HH patients and caregivers around sleep, quality of life and other critical topics.
• Walkers wore their HH t-shirt on the national mall for the Annual Epilepsy Walk and in communities world-wide
• Hope joined national awareness days for International Epilepsy, Rare Disease, Purple Day, National Epilepsy Awareness Month
• 2 Boosters raised funds for HH
• The first annual OrthoBethesda Great Strides 5K launched
• Hope for HH website is relaunched
• Instagram and Twitter channels are launched; Youtube channel is reorganized
• International outreach to Latin America, Germany, Japan, China, and Russia
• Strategic Plan developed
• Organized 3rd Annual International Symposium on HH (London, UK)
• Gene Sequencing Project findings are publicly disseminated
• Hope for HH expands into the UK with the formation of the UK Affailiate
• Fundraising initiatives includes t-shirt boosters
• Focused Ultrasound Clinical Trial launched at UVA and Nicklaus Miami Hospitals
• Dr. Helen Cross is appointed Chairman of the Hope for HH Medical Advisory Board, 2015-2016
• National Epilepsy Walk in Washington DC April 2015
• 4th Annual M-o-oving Thru’ The Mud fundraiser is scheduled for July 2015
• 2nd Annual HH Family Conference in Houston, TX, July 2015
• The television program “The Doctors” features a story about Dr. Peter Nakaji and 2 HH patients
• The Rare Epilepsy Network, including Hope for HH, is awarded a $1M grant to launch a rare epilepsy database/registry
• Rare Epilepsy Network launches and begins recruiting HH and other rare epilepsy patients
• The 3rd Annual M-o-oving Thru’ The Mud fundraiser raises $25k thanks to Board member Wendi Tipps and her incredible committee and community
• HH families and friends rally to organize awesome fundraisers for HH including Eli Donn’s Quarter Auction
• Genzyme employees run the Boston Marathon in honor of HH patients
• Hope for HH team comes in 3rd place at the National Epilepsy Walk for Most Walkers
• Professional medical Journal “Epilepsia” publishes Epilepsy Vol. 55 including Hope for Hypothalamic Hamartomas – Co-Founders Stories
• Hope for HH adds “Amazon Smile” to its online fundraising partners – where a percentage of each Amazon purchase supports Hope for HH
• Hope for HH attends AES
• Hope for HH funds its first research project with Dr. Jai Wu at Barrow Neurological Institute (BNI), Phoenix, AZ
• Hope for HH partners with Duke Univeristy, BNI and Univeristy of Melbourne on an HH specific genetic sequencing project
• Hope for HH helps organize the 2nd International Symposium for Hypothalamic Hamartomas (Marseille, FR) bringing together 35+ of the world’s foremost HH neurosurgeons, neurologists, epileptologists, neuropsychologists
• Hope for HH hosts the first International Family event as a part of the Symposium in Marseille
• Dr. Craig Miller testifies at the Curing Epilepsies 2013: Pathways Forward Conference
• Hope for HH partners with Epilepsy Foundation and other rare epilepsy organizations to apply for a $1M PCORI grant
• Board Member Ilene Miller is appointed to National Institute for Neurological Disorders & Stroke Advisory Board Council, representing HH, epilepsy and the voice of hundreds of other rare neurological diseases
• HH families and friends rally to organize awesome fundraisers for HH including Our Hope Phoenix, Quilters Bee, and Belt Buckles
• Hope for HH adds online fundraising partners Good Shop, Good Dining, Good Search
• Hope for HH attends AES
• Hope for HH comes in 3rd place at the National Epilepsy Walk for Most Walkers
• M-o-oving Thru’ The Mud fundraiser raises $20k
• Wendi Tipps joins the Hope for HH Board of Directors
• Dr. Rekate is appointed Chairman of the Hope for HH Medical Advisory Board, 2013-2014
• Hope for HH Blog launches
• Inaugural M-o-oving Thru’ The Mud fundraiser raises $15k
• 1st Annual HH Symposium for Patients & Caregivers, Phoenix, AZ
• ABC Nightline chronicles the stories of the Dysart and Rocha families as they undergo laser surgery
• Hope for HH invites new Medical Advisory Board members Drs. Daniel Curry (Texas Children’s, TX), John Fulton (BNI, AZ), Jeffrey Rosenfeld (Monash University, AU)
• Dr. Rekate launches the Hypothalamic Hamartoma Center at The Cushing Neuroscience Institute at North Shore-LIJ Health System, NJ.
• Board member Emma Kane testifies at the XX Stereotactic & Functional Neurosurgery Conference (Marseille, FR) on behalf of HH families and patients worldwide
• Institute of Medicine Releases: Epilepsy Across the Spectrum: Promoting Health & Understanding including testimony from Board members Lisa Soeby & Ilene Miller
• Neurology Now interviews Board member Lisa Soeby and publishes article “Too Rare for Research”
• Epilespy.com with Dr. Joe Sirven interviews Board members Lisa Soeby & Ilene Miller for program Hallway Conversations
• Board Member Ilene Miller testifies before the Interagency Epilepsy Working Group Meeting for Vision 20/20
• Board Member Ilene Miller testifies at NINDS Nonprofit Forum representing Hope for HH & Vision 20/20
• Texas Children’s Hospital is first to use state of the art Laser Ablation Surgery on HH patients
• Television program Grey’s Anatomy airs a story about an HH patient, Put Me In Coach, 10/27/11
• Hope for HH partners with National Organization for Rare Diseases
• Seizure Tracker adds HH and gelastic seizures as a seizure type to its seizure tracker software after recommendations by Hope for HH
• Board Members Lisa Soeby & Ilene Miller testify at Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies (March & June 2011)
• Hope for HH participates in Partnering to Advance Therapeutics for Neurological Disorders (June 2011)
• Hope for HH participates in Vivent Gives Back - awareness campaign
• In an effort to raise awareness, Hope for HH adds links to: National Intistute of Neurolgoical Disorders & Stroke, Cure Epilepsy, Pediatric Endocrinology Society, American Epilepsy Society
• Letter of Introduction regarding Hope for HH’s advocacy efforts is sent to 100 National Association Epilepsy Center nationwide
• 50+ people walk for HH at the National Walk for Epilepsy in Washington D.C.
• HH flyers distributed via NORD at American Academy of Pediatrics (October 2011).
• Hope for HH joins Vision 20/20 - a national epilepsy task force committed to eradicating seizures
• Epilepsy Foundation adds HH specific content to epilepsyandmychild.org.
• Hope for HH hosts a Social Networking Group at the annual American Epilepsy Society meeting (December 2011)
• Hope for HH Medical Advisory Board welcomes Dr. Harold Rekate (Chiari Institute)
• Hope for HH Launches Inaugural Medical Advisory Board and appointed Dr Jack Kerrigan as Chairman.
• Hope for HH website launches along with HH Family Forum
• Hope for HH MAB works on an international definition of HH
• Hope for HH attends American Epilepsy Society meeting
• Hope for HH attends first Vision 20/20 meeting
• Emma Knott joins Hope for HH Board of Directors
• Incorporated Hope for Hypothalamic Hamartomas as a 501©3 nonprofit organization
• Lisa Soeby & Ilene Miller meet on a National Walk for Epilepsy in Washington DC and envision a Foundation. They invite Erica Webster and Dawn Cerven to join them as Board members and the original Hope for Hypothalamic Hamartomas Board of Directors was born.