Education & Support
Our First Virtual Conference Attracts Over 2,000 People
For the first time ever, our National Conference on Hydrocephalus, HA CONNECT, was held entirely online. A record 2,016 people from 72 countries participated in our virtual sessions and connected through our HA CONNECT mobile app, proving that not even COVID-19 can dampen the spirits and enthusiasm of the hydrocephalus community.
We made the decision to go virtual due to the COVID-19 pandemic. Thanks to our conference sponsors, we were able to make HA CONNECT free of charge. This, plus the fact that it was held virtually, allowed more people to participate and enabled our U.S community to meet others impacted by hydrocephalus from all parts of the world.
“We were initially very disappointed about not being able to connect in a live space…then we realized we could have these amazing connections with individuals from all corners of the world,” said Diana Gray, HA’s President, and CEO, during the opening session. “By having a virtual conference we are able to bring this exciting content to many who would not have otherwise been able to attend.”
HA CONNECT, held June 26-27, offered a wide range of sessions featuring over 25 speakers including world-renowned medical professionals, scientists, and other experts. Participants learned about the latest research on hydrocephalus, received helpful tools to navigate the daily challenges of the condition, and formed lasting connections with others through the official HA CONNECT app.
Whether it was an introduction to mindfulness techniques or an overview of medical care transition for teens, HA CONNECT featured a session for everyone, with tracks for adults living with hydrocephalus or Normal Pressure Hydrocephalus, parents, and teens. The Robert Pudenz Lectureship featuring new research by Young Investigators, hosted by Dr. J. Gordon McComb, stood out as a highlight of the first day. The session showcased exciting hydrocephalus research being conducted by the brightest emerging scientists in the field. Other highly-attended sessions of the first day included the session on “Chronic Headaches and Hydrocephalus: When it’s Not the Shunt,” and “Brain Matters: Hydrocephalus 101,” where Drs. James McAllister and Marion (Jack) Walker, from HA’s Medical Advisory Board, took participants on a journey through the brain.
One of the high points of the second day was a panel of young adults answering questions from teenagers about living with hydrocephalus. The wonderful young adult panelists spoke from their own teenage experiences with hydrocephalus and advised teenagers to “Be an advocate for yourself, lean on your support team, and live life to the fullest!”
The conversations and connections made through the HA CONNECT app were exciting to see. Many people reconnected with old friends or made new ones through the app’s various “community walls.”
“It is the first time I have heard from others the emotions and experiences we have felt and had – validating that what we are going through is real. We don’t have these resources in our country, but you have inspired and fueled me to become an advocate for Hydro and my beautiful daughter,” said participant Vicky Blanford.
Aesculap Inc. has been a valued partner of the Hydrocephalus Association (HA) for more than 20 years, having a shared commitment to the hydrocephalus community and continually driving advances that will improve the lives of people living with the condition. In collaboration with MIETHKE since 1999, Aesculap works to provide groundbreaking shunt system solutions for the complex treatment of hydrocephalus, including last year’s launch of the M.blue™ Valve. Aesculap has been a dedicated supporter of HA’s WALK to End Hydrocephalus, as well as our support and education programs. Most recently, they were a sponsor of our 2020 HA CONNECT National Conference on Hydrocephalus which was entirely virtual for the first time and reached our largest audience ever. We are grateful for their partnership. To learn more about the M.blue Valve, check out our conversation with them published in the spring of 2020: https://www.hydroassoc.org/a-conversation-with-aesculap-about-new-m-blue-valve/
“Like HA, Aesculap endeavors to enhance the lives of those in the hydrocephalus community. Our vision of collaborative excellence to improve the quality of a patient’s life is the foundation of all that we do. We strive to offer options that more closely meet the needs of the individual patient, since each experience is unique. We aim to help take the headaches out of treating hydrocephalus."
Academic Scholarships Awarded to 12 Young People
HA’s scholarship program was established in 1994 to provide financial assistance to capable and promising teens and young adults who live with the ongoing challenges and complexities of hydrocephalus. In 2020, we awarded scholarships to 12 bright young people to help them pursue their academic goals.
These remarkable young adults are not only successfully managing their hydrocephalus, they excel in the classroom and give back to help their local communities.
McGwire (Mac) Gray
Gabriel (Gabe) Puthoff
These twelve scholarships are funded by the: Gerard Swartz Fudge Memorial Scholarship Fund, one scholarship which is supported by Molly Mastrangelo, Morris L. and Rebecca Ziskind Memorial Scholarship Fund, Anthony Abbene Scholarship Fund, Justin Scot Alston Memorial Scholarship Fund, Mario J. Tocco Hydrocephalus Foundation Scholarship Fund, Baldus Family Scholarship in Memory Gerard Swartz Fudge Scholarship, Kate Finlayson Memorial Scholarship, and the Hydrocephalus Association Scholarship, which is provided by Erik and Lisa Chamberlain.
Thank you to all the funders for their generosity and the Scholarship Committee for all their support and dedication.
Helping Our Community Through the COVID-19 Pandemic
When the COVID-19 pandemic began, there were a lot of unknowns about the virus and its impact, especially on those with chronic conditions like hydrocephalus. To help our community navigate this uncharted territory, we worked with our Medical Advisory Board (MAB) to help alleviate their concerns and answer their questions.
Through our Helpline and online platforms, we received questions from members of the community about how the coronavirus impacted people with hydrocephalus so we developed an online resource center, COVID-19 Guidance for People Living with Hydrocephalus, that included responses to common questions, answered by members of our MAB.
We also hosted a special two-part virtual Q&A event on March 20, 2020 to address concerns from the hydrocephalus community related to COVID-19. Part I was a webinar with neurologists and neurosurgeons from our MAB, who offered an overview of COVID-19 in relation to hydrocephalus, guided by some of the questions we received on social media. Part II of the event was a live Q&A with our medical experts to answer questions directly from our viewers.
In light of the pandemic, we also held virtual Community Network meetings and launched a series of virtual meet-ups on Facebook. These virtual meetups – Young Adults in their 20s weekly meet up, Teens monthly meet up, and Adults weekly meet-ups – were a wonderful way for members of our community to feel connected and to meet others living with hydrocephalus, especially during the pandemic when we were all quarantined at home.
“The COVID-19 pandemic changed our world and in 2020 we found ourselves living in an unprecedented time of uncertainty. But regardless of what was happening in our country and around the world, the Hydrocephalus Association continued providing our community with support, trusted resources, and educational programs,” explained Diana Gray, HA’s President, and CEO.