888-533-4443 Info@FamiliesforHoPE.org 1219 N. Wittfield Street, Indianapolis, IN 46229

Awareness Shirts

New t-shirts and tanks are now available to order just in time for Holoprosencephaly Awareness Week!

In the spirit of FRIENDS 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!

Enter our Annual Costume Contest

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.

NEWS: Families for HoPE Names Executive Director

Susan Millender, Executive Director
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.

Facebook

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!

Seeking an Executive Director

We are looking for an Executive Director for Families for HoPE!

Executive Director Job Description
 
 
Summary: Families for HoPE (FFH) is a nonprofit organization seeking to address the needs of families and children diagnosed with holoprosencephaly and related brain malformations. The primary programs of FFH include bi-annual conferences, social media support groups, accurate medical information distribution, and one-on-one support for caregivers. FFH is seeking a passionate, organized individual to help spread hope to families affected by a holoprosencephaly diagnosis. The Executive Director job is currently part-time and does not include benefits.
 
 
Job purpose: To engage the community in the mission of Families for HoPE through outreach, education, and support. The Executive Director is responsible for honoring the history of the organization while finding ways to expand its reach. A successful director will balance administrative duties such as fund raising and marketing with programmatic duties such as family engagement and medical outreach.
 
 
Job responsibilities (not in order of importance):
• Coordinate volunteers
• Recruit, supervise, and appreciate the organization’s volunteers. Find meaningful volunteer work that honors both the mission of the organization and the talents of the individual. This includes working with the Board of Directors, the Parent Advocacy Group, and other advisory bodies to ensure the future sustainability of FFH. The ED will also help cultivate potential members for the Board of Directors.
• Organize fundraising materials and efforts
• Together with the Board of Directors, develop and implement an annual fundraising plan including grant submission schedules, appeal letter targets, and donor cultivation efforts.
• Ensure all board members are well supplied with materials and educated on current fundraising efforts and vehicles for charitable giving.
• Receive new families
• Work with the Parent Advocacy Group to ensure new families receive appropriate welcome packets and are connected to social media groups, and other needed resources.
• Manage database
• Use Bloomerang to receive new families, maintain current contact information, communicate with the public, and engage supporters.
 
 
The Executive Director must also:
• Submit reports on time and in a format acceptable to the Board of Directors.
• Work with the Treasurer to ensure proper handling and reports of all funds.
• Keep organization documents and records safe and easily accessible by the appropriate parties.
 
 
Minimum Qualifications include:
• Bachelor Degree or 4 years or more work experience in not-for-profit management.
• Project management experience
• Fundraising experience
 
 
To apply, please submit the following information to Roxanne@FamiliesForHope.org:
• Cover letter
• Resume
• Three (3) references
 
 
Applications will be accepted until 5pm EDT on July 15, 2021.
Wear your HoPE. Share your HoPE logowear sale

Order by February 5

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!

We can make your life easier!

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.

Hospitalized?
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. 

Meal Train?
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.

Explaining HPE?
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.

Click here to see more benefits of CircleOf and HPE

 

 

Download and enter access code 8443 to connect your team to the Benefits Center for HPE resources.