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

HoPE Walk ‘N’ Roll

First Annual HoPE Walk ‘N’ Roll festival

Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.

Deeply committed to raising awareness of holoprosencephaly, a group of HPE families in Arizona are joining together to host an awareness event and fundraising walk on November 9th 2019. The event will be held at Power Ranch Park 4546 E Haven Crest Dr Gilbert, AZ 85297

Grandparents View

Written by Pete Lawler

While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last year’s event. 2018 was my second conference. The first was in 2008 when Chloe was a baby, and I learned so much about HPE and about my granddaughter.

Like a lot of families, when we got her diagnosis, even though the doctor told us not to go home and google it, we did. It was scary seeing “the worst”.  Then we went to the conference and learned that it isn’t all gloom and doom. I met a young lady that at, I believe, 6 years old told her doctor her name and said, “I have Holoprosencephaly”. I was just learning how to say it and still look it up to spell it.

Many of our children cannot speak, like our granddaughter, Chloe, but that doesn’t mean they cannot express themselves.

In 2018 Dorothy and I had the opportunity to attend the conference again. This time it was at Great Wolf Lodge in Mason, Ohio as it will be in 2020.  The chance to see families I met in 2008 and to meet new families was too much to miss out on so we loaded up and headed north. I’m sure some of the families got tired of me and my camera.  I took hundreds of pictures during the conference. Some of the kids became favorite subjects of mine and if you see the pictures you know why. I think it is the eyes.

This little doll was one of my favorite picture subjects.  I probably have more pictures of her than even my own granddaughter.

Getting the chance to watch these families (mostly the kids) interact was worth more than any registration fee. I got to meet some great people from as far away as Holland. Miss Kate and her family became friends who we still stay in touch with. Unfortunately, Kate and the crew will not be able to attend the 2020 conference, but we look forward to seeing them again in 2022. Last year’s conference gave us the chance again to learn more about these amazing kids (I guess I should say people as some are adults now).  The speakers that come are some of the most knowledgeable in the field and give families hope instead of just telling parents how short their life will be.

As I look back through these pictures again, I see children interacting with their siblings and other kids.  I see wonderful smiles on faces that can light up a room and make you smile on your worst day. Our children are full of life and have purpose.

At the 2018 conference I also attended as a vendor.  I make vinyl decals and through my decal booth, I met even more of the families and learned some of their stories. While designing decals to fit a specific family, we would talk, and I got the chance to learn about them and their child.  I wouldn’t give up that opportunity for anything.

On top of the invited speakers, they had an evening just for them to go, relax and get to know each other more. The guys, well we had an evening to go and see one of the best collections of classic cars I have ever seen and to bond and get to know each other better as well.

The facility has a great pool area where the families got the chance to go and spend time relaxing and be with old and new friends. It’s also right next door to Kings Island Theme Park. Some of the families and a lot of the older kids made a day of it on the rides there.

Overall, the conferences are great experiences for families. There is no better way to learn about Holoprosencephaly than to be in a building with a group of families who are going through the same thing as you.  I am so looking forward to attending in 2020. While I’m thinking about it, I want to say thank you to everyone who had a part in all the past conferences and for those who are working so hard already for the 2020 event.

For those who didn’t attend in 2018, this picture will give you an idea of how many were in the last conference. Hope to see everyone in April.

Exhausted

For the exhausted mom who hides a few minutes to cry in the bathroom…

For the mom hidden in the bathroom, because she needs a few minutes of tranquility while slipping tears from her eyes.

Rare Disease Day

What is holoprosencephaly?

Holoprosencephaly is an abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres. The condition can also affect development of the head and face. In general, the severity of any facial defects corresponds to the severity of the brain defect. The most severely affected people have one central eye (cyclopia) and a tubular nasal structure (proboscis) located above the eye. In the less severe forms, the brain is only partially divided, and the eyes usually are set close together. Other signs and symptoms often include intellectual disabilities and pituitary gland problems. Holoprosencephaly can be caused by mutations in any of at least 14 different genes; chromosome abnormalities; or agents that can cause birth defects. It may also be a feature of several unique genetic syndromes. In many cases, the exact cause is unknown. Life expectancy for people with this condition varies, and treatment depends on the symptoms and severity in each person. (https://rarediseases.info.nih.gov/diseases/6665/holoprosencephaly/cases/27877)

Subdivisions of Holoprosencephaly

*Alobar, in which the brain has not divided at all, is usually associated with severe facial deformities. 

*Semilobar, in which the brain’s hemispheres have somewhat divided, causes an intermediate form of the disorder. 

*Lobar, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly the baby’s brain may be nearly normal.

Causes

Holoprosencephaly is a birth defect that arises during the first few weeks of the pregnancy. Diabetes in the mother during the pregnancy can increase the risk of holoprosencephaly in the fetus. However, for most children, no known intrauterine exposure is identified that is causally related to holoprosencephaly in that child.

Some children will have an identifiable genetic cause of holoprosencephaly. Approximately one-third of children born with holoprosencephaly have an abnormality of the chromosomes, which contain the genetic material (DNA). The most common chromosomal abnormality associated with HPE is when there are 3 copies of chromosome 13 (trisomy 13), although a number of other chromosomal changes can also cause holoprosencephaly.

In other children, holoprosencephaly is due to a change in a specific gene. These changes cause the genes and their proteins to function abnormally, and this affects the development of the brain, resulting in holoprosencephaly. Some of these genes are SHH, SIX3, TGIF1, ZIC2, PTCH1, FOXH1, NODAL, CDON, FGF8, and GLI2. Holoprosencephaly can also occur in certain genetic syndromes in which there are other medical issues besides those mentioned in this report that affect organs in addition to the brain and face (e.g., Smith-Lemli-Opitz syndrome).

Despite the above understanding of the causes of holoprosencephaly, the exact cause of the condition is not identified for many individuals. There are likely to be additional genetic causes other than those already known and mentioned above. (https://rarediseases.org/rare-diseases/holoprosencephaly/)

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