Happy New Year: Kicking off 2020 in a BIG Way
|
|
Get Involved: Hope for HIE Hustle 5K Launches
So many of our families have asked about hosting awareness events to promote HIE Awareness Month in April, and we found a solution we are excited to share and kick off!
With the goals of raising awareness and promoting community, we invite you to join us, anywhere in the world, and participate in the first ever HUSTLE FOR HOPE 5K.
Whether you choose to walk, run, or roll to complete, whether you do it over time, with friends and family, your local community at an event you set up, or at our 2020 Mega Mom Retreat, this event is for anyone and everyone who is interested in raising awareness.
Registration is NOW OPEN to all. Registrants can choose from the basic package of receiving a bib number, finisher medal and event information, or choose to also get a finisher t-shirt. Race packets ship internationally, so ANYONE can participate anywhere in the world.
We also encourage you to invite and share with others!
|
|
Hope for HIE invited to join Rare Epilepsy Network
The Rare Epilepsy Network, a collaboration between different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures, has invited Hope for HIE to join its network.
The organization is inviting groups that were not part of the collaboration before to shape its future structure and focus and be involved in future collaborative research projects.
Children with HIE are at a significantly greater risk of developing epilepsy. While certain epilepsies are rare like Infantile Spasms, Lennox-Gastaut Syndrome, and ESES, HIE is a leading cause of each type.
We thank REN for inviting us to join the discussion about a condition that impacts so many of our HIE families.
|
|
Encouraging Self-Care for Parents
Parents of medically-complex children are at risk for burnout, depression, anxiety, and a slew of other health issues. Many do not feel they have time to care for themselves.
This year, Hope for HIE started a new initiative of monthly challenges intended to get our families to find small, but significant ways to positively impact their health and well-being.
This month's challenge is journaling, and more challenges are planned, with each hosted by an HIE parent. For parents in our network, more information can be found in our Hope for HIE "Self-Care for Parents" group.
Mental Health Q&A Event - EMDR Therapy with Rebecca Huls
This week, we are hosting a public Q&A Facebook LIVE! event on the topic of
EMDR, a specific type of therapy that many parents in our network have benefited from to deal with the trauma they have experienced.
Join us on our
public Facebook page to ask any questions you may have with EMDR clinician
Rebecca Huls, on Thursday, January 23 at 9 pm EST. The video will be available after the event, as well as on Hope for HIE's
YouTube channel.
If you are a clinician, please pass along this information to the families you work with.
|
|
Thank you for supporting Hope for HIE
|
Over $20,000 raised in holiday giving appeal
This year's holiday giving appeal raised over $20,000, with more than 300 individual donors, and over 75 fundraisers hosted by HIE families.
This funding allows us to support fellow HIE families -- newly diagnosed, those facing hospitalizations, and our loss families, raise awareness about HIE through providing educational materials to clinicians, patients and their caregivers, and promote educational amd research efforts surrounding HIE and other conditions related to it.
Thank you so much for your support.
|
Bringing HOPE to HIE Families
For the fourth year in a row, Hope for HIE held 10 Days of Giveaways in our community providing equipment, switch-adapted toys, carriers that make life with challenges more accessible for our HIE children, and items to make caregiving and life management a bit easier for our community.
This year, we were able to give 44 families a little extra HOPE for the Holidays. Naomi, from Chicago, won a date-night in giveaway.
"Hope for HIE is the community I never knew existed, never knew I needed, but now I don’t know what I would do without it. It is made up of some of the strongest and most inspiring families who have taught me that it is OK to cry and OK to laugh. It is the one place I can go where I know I will be understood and supported. This journey would be a whole lot harder without HOPE for HIE," Naomi said.
|
|
There's Still Time to Join Us on the Beach!
|
|
Over
85 moms have registered for our upcoming biannual Mega Mom Conference Retreat from April 30 - May 3, 2020 in beautiful St. Pete Beach, Florida. With capacity to hold 100, we are excited to welcome these moms in our community to a weekend of relaxation, reflection, and renewal.
With the theme of connection, we are excited to welcome Ellen Seidman from
"Love that Max" as our 2020 Keynote Speaker. We will also be hosting activities, socials, and sessions focused on different ways to foster and build connections, both on and offline.
Registration is $100, covers two breakfasts and two lunches, all planned sessions, and materials. Special hotel rates have been negotiated for attendees.
Registration information can be found in our
main parent forum, and closes on March 31, 2020.
|
|
We've started building our presence on YouTube. Click below and hit SUBSCRIBE!
|
|
|
|
|
|
|
