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

Walk Around The World

Join HPE families for a Walk Around the World!

Did you know that Families for HoPE has had contact with HPE families from over 50 countries around the globe? A universal refrain we hear repeatedly is the need to raise awareness about holoprosencephaly and help others find HoPE.  As HPE families, what can we do to share our HoPE and holoprosencephaly with the world?

Families for HoPE invites all HPE families to host a Walk Around the World in your local community to raise awareness of holoprosencephaly and to raise funds for the mission of Families for HoPE. (You can also run, bike, swim, dance, roller skate, ride a horse—whatever you enjoy doing with family and friends.)

1. Set a date. We suggest that your walk take place between the dates of April 15 and June 15.

2. Set a location. Walk or hike in a local park, walk in a gymnasium or around the track at your local school. Be sure you have permission to walk in that location prior to your event.

3. Set a goal. Determine how much money you would like to raise and how far you are willing to walk.

4. Recruit walkers. Ask your family and friends to walk with you, and ask them to invite their family and friends to join the fun and support HPE awareness. (Invite scout troops, classmates, co-workers; hang a flyer at the gym, at school, at work, at church, at Weight Watchers.)

5. Use Facebook. If you use Facebook, create an Event on Facebook to help advertise your walk. You and your walkers may also create a Fundraiser to collect donations at: https://www.facebook.com/fund/holoprosencephaly/

6. Inform Families for HoPE. We can help promote your event on our website and social media accounts. Also, Families for HoPE can search our database and reach out to other HPE families in your area and inform any of our donors who are in your area as well.

7. Share your story. Contact your local newspaper or television news channels who may be interested in covering your walk as a human-interest story.

8. Take photos at your walk. Share them on social media, and be sure to tag the city and state, or country where you are walking. Let’s flood Facebook, Twitter, Instagram with all of our walkers and let’s see how far and wide our HoPE can reach around the world! Use hashtag #HoPEwalk2019

9. Collect and submit donations. In addition to a Facebook fundraiser mentioned in #5 above, donations from your walk may be submitted to Families for HoPE via online donation at http://www.FamiliesforHoPE.org. Checks may be payable to “Families for HoPE, Inc.” and mailed to Families for HoPE, Inc., 1219 N. Wittfield Street, Indianapolis, IN
46229, USA. Please convert all cash to a check or money order.

Funds raised helps Families for HoPE continue its mission to serve our HPE families through the following:
1. Distribution of information and educational materials about holoprosencephaly
2. Conduct Family Conferences on Holoprosencephaly
3. Networking and support through social media platforms
4. Medical information collaborations with The Carter Centers for Brain Research in Holoprosencephaly
5. Parent-to-parent support program
6. Sponsor special events
7. Medical outreach

For questions, please contact Becky Wilson (Jack’s mom) at Becky.Wilson@FamiliesforHoPE.org or Families for HoPE at
info@FamiliesforHoPE.org

Click the links below to download this information and a pledge form you can use to help collect donations.

Walk Around the World Announcement
Pledge Sheet for Walk Around the World

What HoPE means to us

What is it really…this HOPE? And why is it so important?

Hope is something we can feel, but hope is also an intentional choice.

Definition;
hope  /hōp/
a feeling of expectation and desire for a certain thing to happen.”he looked through her belongings in the hope of coming across some information”

synonyms:  aspiration, desire, wish, expectation, ambition, aim, plan, dream, daydream, pipe dream

Save the Date for the 2020 Family Conference on Holoprosencephaly

Jack Wilson has attended every conference that Families for HoPE has conducted, and he has been busy today making phone calls to make sure his friends save the date for the 2020 Family Conference on Holoprosencephaly!

Please watch this video of Captain Jack in snowy Wisconsin calling his friend Brianna in New Jersey to share the exciting news with her.

Our friends at Great Wolf Lodge in Mason, Ohio loved our HPE families so much in 2018 that Families for HoPE has decided to return!  Save the dates of June 14-17, 2020!  We have informed the teams at the Carter Centers and the NIH, and they are excited to be joining us all once again!

Additional details will be announced in the weeks to come regarding registration fees, volunteer opportunities, and more!

IMGP8153

NIH Study on Environmental Determinants of Holoprosencephaly

NIH Study on Environmental Determinants of Holoprosencephaly

We understand only a fraction of the causes of holoprosencephaly and what
leads to the wide spectrum of clinical features seen in patients with
holoprosencephaly. In this environmental study, we are trying to better
understand the different factors that can contribute to holoprosencephaly and
its presentation that often varies from patient to patient.

What does the study entail?
Filling out out a 45-minute online survey

What does the survey ask about?
The survey asks about your pregnancy and the three months before
pregnancy.  Please go to http://hope.ctss.nih.gov to get more information.

We are actively recruiting to reach our study goal of 200 participants!

If you are interested in filling out the survey:

  1. Contact Yonit Addissie at yonit.addissie@nih.gov or 301-402-5812
  2. Then, go to http://hope.ctss.nih.gov

*There is no compensation for this study