Holoprosencephaly Awareness Week is March 20-26, 2022. Click here to download png files you can save and use on social media during Awareness Week. Please encourage your online friends to help raise awareness too and participate in the #I’llBeThereForYou HoPE Challenge.
New t-shirts and tanks are now available to order just in time for Holoprosencephaly Awareness Week!
In the spirit of F•R•I•E•N•D•S which are so important to have in our lives, celebrate Holoprosencephaly Awareness Week with us between March 20 through March 26!
Looking for a fun activity to celebrate HPE Awareness Week? How about participating in our #I’llBeThereForYou HoPE Challenge?
Find a fountain in your hometown, invite some friends to join you at the fountain with umbrellas, and capture the moment in a photo or take a video you can share on social media. We would love to see the results! Share them with us at info@FamiliesforHoPE.org.
Order your shirts today by clicking on the ad below!
Holidays can be a challenge for HPE parents, and there are so many uncertainties that we face, especially at Halloween:
- What costume?
- How do we incorporate the wheelchair into the costume?
- How do we get to the front door if there are steps?
- My child has a g-tube, so what do we do with all of this candy?
- We won’t spend this Halloween in the hospital again, will we?
Even with the challenges, we push forward, we make plans, and we create great memories with our children. And sometimes, our kids end up with the best costumes in the neighborhood!
To celebrate our special children, we invite you to share a photo of your child in costume and participate in our annual fundraising contest!
Hurry, the deadline for entering the contest is Tuesday, November 2 at 4:59pm EDT. Enter at WWW.GOGOPHOTOCONTEST.COM/FAMILIESFORHOPE
After entering the contest, campaign for your favorite photo by sharing a link on Facebook, Twitter, Instagram, TicTok, email, etc. By collecting donation votes, $1 per vote, you’ll be supporting Families for HoPE in its effort to bring HoPE to HPE families.
We all know too well that life can be unpredictable, so you may submit a photo of your child with HPE in costume from this current year or a past year.
The grand prize is a Visa gift card for $150.
2nd place is a Visa gift card for $100.
3rd place is a Visa gift card for $50.
Voting for the costume contest begins on Tuesday, November 2 at 5:00pm EDT. The contest will remain open for voting through November 30, which is the date designated for GivingTuesday. This provides you with an opportunity to collect final votes on a date when many are seeking a cause to support on GivingTuesday, a global day of giving.
If you have any questions about the contest or difficulty entering, please contact us at info@FamiliesforHoPE.org or at 888-533-4443.
Families for HoPE Names Executive Director
Indianapolis, IN – Families for HoPE recently welcomed Susan Millender as Executive Director. Millender is the first person to fill the role for the Indianapolis-based nonprofit organization in its 16-year history. Millender will work in close partnership with the Board of Directors to set Families for HoPE’s strategic direction and programming in support of children diagnosed with holoprosencephaly and related brain malformations.
Millender enters the role with a long-standing reputation for health advocacy work, specifically among children and families struggling to gain and maintain well-being and resilience. She is a member of the National Federation of Families. Previously, Millender led Seattle-King County Washington’s Guided Pathways nonprofit family support organization as Executive Director and served as Program Director for the American Diabetes Association of Washington and Northern Idaho. She attended Ball State University, Muncie, IN and graduated from Calumet College, Whiting, IN with a BA in Mass Communications.
“All of us at Families for HoPE are thrilled to have Susan as our very first Executive Director, and we look forward to seeing Families for HoPE continue to grow and flourish under her leadership,” said Becky Wilson, Board President.
Today, Facebook experienced a service outage which affected the online support groups sponsored by Families for HoPE. Please remember that you may contact Families for HoPE at anytime via email at info@FamiliesforHoPE.org or via phone at 888.533.4443.
HoPE is only a phone call or email away, and we are here to help! Also, don’t forget to check out our Helpful Resources page, too!
We are looking for an Executive Director for Families for HoPE!
Back by popular demand is Families for HoPE logowear. Choose among t-shirts (short-sleeve, long-sleeve and ladies cut) and hoodies in charcoal or navy.
The front of the apparel is printed with the colorful Families for HoPE logo. Printed on the back is the first name of every child we know with HPE. At the top of the block of names is the phrase, “I have HoPE because of you!” and at the bottom is, “Holoprosencephaly Awareness”.
This campaign is a fundraiser for Families for HoPE conducted by CustomInk, and open for a limited time, so be sure to order your logowear today!
Families for HoPE is excited to announce that we have teamed up with CircleOf, Inc. to offer a caregiving app for HPE families!
We continually seek solutions to enhance the lives of our HPE families, and we are thrilled to offer the CircleOf app to our HPE community and those in your circle of support and care.
CircleOf gives family caregivers the power to organize, collaborate, and get extra help while rallying friends, family, and others in your community to help during a challenging time.
Here are just a few ways that CircleOf can make your life as a caregiver easier:
News to share?
Need to share an update or news, but don’t wish to share it on social media or in a group text? Using the CircleOf app, you have the ability to manage all of your communications from one place.
What do you do when your child is in the hospital and you need help organizing rides, childcare, or household chores? You can create each task in the CircleOf app, and allow your circle to volunteer for the task.
Have a friend who wants to organize meals for your family? You can designate that friend in the CircleOf app as a member of your Inner Circle (which allows administrative access), and that friend will be able to schedule the dates and times for meal delivery. Others in your circle can then volunteer with what works for their schedules.
Are you trying to educate your family and friends about HPE at the same time you’re trying to learn about it yourself? After you download the CircleOf app, use access code 8443 when you create your team. This will give your CircleOf team access to the Benefits Center where they can view resources about HPE. As a bonus, they will also have access to the Families for HoPE team where they can stay informed of activities and events affecting the HPE community.
Download and enter access code 8443 to connect your team to the Benefits Center for HPE resources.