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

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Back by popular demand, it’s the I love someone with holoprosencephaly apparel!
Available in t-shirts and hoodies, you can show your love of someone with HPE and raise awareness for HPE at the same time.  You can even help someone learn how to pronounce “holoprosencephaly”.

Printed on the back of each shirt or hoodie are the first names of all the children with HPE who are in our Families for HoPE database.  (Whenever there is more than one name with the same spelling, that name will appear only one time on the item to represent all of the children with that same name/spelling.) This includes names of children who are living and deceased.

These are available for a very limited time, and the first round of ordering will close on MONDAY, NOVEMBER 28 so that the ordered items can be printed and shipped before Christmas!  Place your order NOW as this will be your ONLY chance to order and receive before the holidays.

A second round of ordering will reopen in mid-December for orders to be received in January, so stay tuned for an announcement in mid-December.

Anyone can order, so please share with family and friends.  Funds raised will benefit Families for HoPE for its education and support programs to benefit children with HPE and their families.

Jaxsen Plays Football

Jaxsen Grinter loves football, and this all-inclusive flag football program at an elementary school in Kansas City is a perfect way for Jaxsen to play the sport that he loves. Go Jaxsen! Way to represent our HoPE family!

#Giving Tuesday, November 29

Reach out to Help Us Raise $10,000 In 24 hours on #GivingTuesday – November 29, 2022

Fifty-two families came together at the 2022 Family Conference on Holoprosencephaly to learn, make memories and life-long friendships because you cared enough to donate to Families for HoPE.  Your generous support allowed us to connect sixty-two new families touched by holoprosencephaly to our community, in the past 9 months of this year. The numbers point to the need you help us meet every day.  However, the words of a young mother point to the positive impact you help us make:

Thank you for the card I received welcoming us into the fold of HoPE. I cried tears of overwhelmed relief at the possibility of no longer being an island. . . Thank you for bridging our gap even for a moment with a simple kindness in a handwritten card.

All my best,
Aly Walker, Samson’s momma

As 2022 enters its final months, the need to support children and families touched by holoprosencephaly continues to grow. The medical community still communicates little or no hope to mothers receiving a prenatal diagnosis of holoprosencephaly and, according to recent national news reports, more than 2.2 million US women of childbearing age live in places where there is either no or limited obstetric care.

Now more than ever Families for HoPE’s mission of sharing the HoPE in holoprosencephaly must be delivered.

Please help us raise $10,000 to reach, raise awareness, and educate women AND ob-gyns, geneticists, industry partners and others.  Join our #Giving Tuesday campaign and share our messages with your social media networks on FaceBook, Instagram and Twitter.  Reach out to colleagues, family members, friends and other organizations in your community and invite them to give at www.familiesforhope.org or email info@familiesforhope.org to learn more about other ways you can participate.

2022 Costume Contest

Holidays can be a challenge for HPE parents, am I right?  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!  We all know too well that life can be unpredictable, so you may submit a photo of your child in costume from this current year or a past year.

New this year, there are two prize categories—(1) individual costume and (2) family or group costumes.

To enter the costume contest or to learn more, visit https://www.gogophotocontest.com/familiesforhope but don’t delay because the deadline to enter is Tuesday, November 2 at 11:59:59 pm ET.

Voting will begin on Wednesday, November 3 at 12:00:00 am ET.  Campaign for your favorite photo by sharing a link on Facebook, Twitter, 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.

The contest voting deadline is on Giving Tuesday–Tuesday, November 29 at 11:59:59 pm ET.

Good luck!

Thank You for Taking the Time to Help Us Grow!

Thank you for your interest in participating in the 2022 HPE Family Conference Survey.  Unfortunately, the survey is now closed.  Please look for future surveys.  The information we collect now, and in the future will be used to help guide Families for HoPE to provide complete and better services for our HPE families.

 

Attention families who attended our 2022 Family Conference on Holoprosencephaly in Mason, Ohio

It was a pleasure hosting you at Great Wolf Lodge & Conference Center in June! We thank you for coming to the conference. All of YOU made this year’s conference such a very special time, and we invite you to share your feedback on the conference with us. If you did not have a chance to complete our Family Conference Survey before leaving the conference, please do so now by accessing the survey here at –https://ffhsurvey22clt.herokuapp.com/ and submitting your completed survey.

Your ideas and suggestions are very important to us and needed to help us make our 2024 Family Conference on Holoprosencephaly even more meaningful and enjoyable for families.

 

 

Order shirts by April 1

ORDER t-shirts, Hoodies and tanks before the april 1 deadline!

In the spirit of FRIENDS which are so important to have in our lives, you have only a few days remaining to order our new HPE t-shirts, hoodies and tanks. The last day to order is April 1, so don’t delay!

 

After you receive your order, please consider participating in our #I’llBeThereForYou HoPE Challenge?  It’s easy to do.

  1.  Find a fountain in your hometown.
  2.  Invite some friends to bring an umbrella and join you at the fountain.
  3.  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!