Another year has quickly passed by. We truly can't believe Hope for HH celebrates 10 years in 2019 since our humble founding in 2009!
More to come in the new year on how we will celebrate a decade of successes both small and large!
Now it's the time where we reflect on 2018 and express our sincere gratitude for the HH patient, professional and volunteer community. As you may recall, our theme for 2018 was engagement. So many of you engaged with Hope on social media, shared your personal journeys on our blog, secured matching donations from your corporations, stepped up as volunteers, raised funds on facebook, walked or ran to raise awareness and money, shared your advice and insights on posts, and donated your time, wisdom, and money to help others. While n
one of us would have chosen t
o be here, we are filled with gratitude for the extraordinary children, parents, families, doctors, volunteers, and advocates who have changed our lives.
As the holiday season and #GivingTuesday
we express our g
ratitude for the HH community that has provided information, advice, comfort, a shoulder to cry on and especially HOPE.
We hope as you plan your year-end giving, you will consider
a donation to HH
so that we can
continue to s
upport families, educate professionals, fund research and grow awareness of this tiny tumor that has profoundly impacted each of
Hope for HH Board of Directors
|L to R Ilene Miller, Wendi Tipps, Kathy Jensen, Erica Webster, Emma Nott, Lisa Soeby.
ALL OUR COMMUNITY
YOUR GENEROSITY HELPS SUPPORT
FAMILIES WITH INFORMATION & TLC
- Our virtual community multiplied as so many of you liked, shared, posted, tweeted and reacted to our weekly posts on Facebook, Twitter and Instagram. We are so lucky to have the extraordinary talent of Erica Webster who works tirelessly to create warm and welcoming community for us all
- Our blogs and newsletters continued to keep everyone in the know regarding HH research and news.
- Several new educational brochures were created in 2018. Print them to share with your doctors, educators, babysitters and others here.
YOUR DONATIONS ENABLED HOPE TO FUND
CRITICAL RESEARCH & SEED INITIATIVES
Hope for HH funds research and from 2017-2018 we funded our biggest 3 grants with more than $70,000 dollars going toward imaging technologies, animal models and a comparative effectiveness study.
Dr. Varina Boerwinkle, a young investigator at Barrows Neurological Institute, who studied how using the FMRI as part of pre-surgical HH ablation planning resulted in higher rates of seizure freedom for patients.
Additionally, an article describing her research was published in a highly regarded medical journal called
which demonstrates peer support for and validation of her findings. Moreover, part of our grant enabled the article to be available to the public and other researchers
. We hope Dr. Boerwinkle will make this screening more broadly accessible and other young researchers will build upon this knowledge to make surgeries even more effective for our families.
We also funded
Drs. Wilcox and West at University of Utah to develop an animal (rat) model for HH. In general, creating an animal model for seizures and epilepsy help advance our understanding of the mechanisms causing the seizures and give us a target to test anti-epileptic drugs and other therapies. The research done in this prestigious lab has generated several hypothesis that our research team would like to explore. They (and we) are sourcing for additional funds to support the continuation of this critical research.
Additionally, we l
aunched an International Comparative Effectiveness Surgery Pilot whereby 16 hospitals around the world have all come together to add data to a common database about outcomes for their surgeries for a single year. Once all of the data is collected, Columbia University
epidemiologist Dr. Hesdorffer and her colleague Slywia Misiewicz will analyze the data looking for trends about which treatments are most effective for which patients across the world. We anticipate these results in 2019 and will greatly inform surgery planning strategies.
We are especially excited to share that Hope for HH is organizing 4th International Symposium on HH in fall 2019 in Washington, DC. As you may recall, Hope for HH previously organized other professional symposiums in Marseille, France (2013) and London, UK (2016). These symposiums gather together thought leaders from inside and outside of HH to identify gaps in research and opportunities for collaboration (including the animal model and comparative effectiveness pilot above). The 2019 symposium is focused on HH and the Co-morbidities that so severely impact our patients and their families in the hopes we can identify new paradigms of intervention, control, management and support.
We would be remiss not to mention our very dedicated international
Medical Advisory Board
who volunteer their time and advice year-round. They write articles, prepare grants, review funding requests, answer questions, present at conferences, organize professional meetings and serve as HH ambassadors in the medical community and beyond! We are lucky to have a committee of clinicians and researchers whose HH knowledge and experience is matched only by their collective compassion and hearts!
Help us continue to support critical research to understand,
cure and manage HH - please donate here!
YOUR ACTIVE PARTICIPATION IN RESEARCH
HELPS PROFESSIONALS BETTER UNDERSTAND HH
- 91 HH families participated in the Rare Epilepsy Network and 1458 patients with rare epilepsies participated as well. The data collected enabled REN to publish an article titled "Comorbidities of Rare Epilepsies: Results from Rare Epilepsy Network" in the Journal of Pediatrics. The article described the prevalence and characteristics of side effects in persons with rare epilepsies including HH. Read the article here. This first of its kind "cross rare epilepsy" research is important to better understand that larger than expected numbers of patients suffering from common concerns including sleep, behavior, anxiety, depression and to encourage research and the medical community to address these concerns.
- Our UK affiliate was instrumental in advocating for laser ablation to be adopted in Europe!
WE SEEK OUT EVERY OPPORTUNITY TO INCREASE AWARENESS
We participate in conferences & summits - Lisa Soeby participated in RARE Patient Advocacy Summit giving voice to HH concerns.
We applaud primetime TV like ABC's Grey's Anatomy when they dedicate 2 episodes this past spring to HH storylines.
We walk in Washington DC and around the world to promote the National Epilepsy walk.
We join in national and international campaigns like
Random Acts of Kindness Week (Feb 13), International Epilepsy Day (Feb 12), Rare Disease Day (Feb 28), Brain Awareness Week (Mar 12),
#Purple Day (Mar 26), (Mar
#SUDEPActionDay2018 (Oct 23),
National Nonprofit Day (Aug 17),
National Epilepsy Awareness Month (Nov) - all with a goal of bringing awareness to HH.
We celebrate when our volunteers are recognized for their work - Ilene Miller won the March of Dimes Heroines of Washington 2018 award for her work for Hope.
WE ENCOURAGE OUR COMMUNITY TO
RAISE FUNDS & FRIENDS
- Thanks to 10 HH families who launched facebook fundraisers raising $8600+ from the US, Norway and United Kingdom and Board members including Kathy Jensen (Walk with Colby) and Emma Nott (Bristol Half Marathon) who led incredibly successful walks and runs! Celebrate your birthday, anniversary or special occasion with a fundraiser on facebook here or organize one in your community.
- Joined the AZ Gives campaign raising more than $1300.
- 2nd 5K Great Strides Run/Walk presented by OrthoBethesda raised $18,000 - more than doubling monies raised and runners from the year prior.
- Major donations for research and support were underwritten by the Ronson Foundation and Young Family for whom we are very grateful to!
- We formalized and launched a volunteer program and welcomed extraordinary volunteers who give of their time and talent: Diane West (Database Management) Bradford Davis (Database); Traci Flan (Patient Support, Advocacy & Awareness); Angela Donn (Patient Support, Advocacy & Awareness); and Lauren Mellon (Patient Support, Advocacy & Awareness)
- Thank you for the generous pro-bono services provided by Julie Robinson (bookkeeping); Lawrence Prosen and the law firm KilpatrickTownsend; Mike Conry (design), among others that so much to our efforts.
- And we received many donations from individuals just like you - each one enabling us to invest more deeply in HH support, information, research, and education.