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

Honoring Brianna

Written by Leslie Harley

In all of the years we have been doing the Family Conference on Holoprosencephaly, I don’t think there has been anyone in attendance who radiates such pure joy when she enters the room as Brianna Bixenman. Accompanied by her parents, Bill and Janet, then 19 year-old Brianna traveled from New Jersey to Dallas, Texas to attend her first HPE conference in 2016. Brianna was diagnosed with HPE at 3 years of age, but as she grew into an adolescent, she wanted to learn more about HPE and other individuals born with it as well. This conference had a huge impact, and Brianna said that for the first time in her life she knew where she fit.  She embraced the kids with HPE and lavished them with her love, and the HPE families definitely embraced Brianna.

Brianna confesses that there were a lot of tears as she said her goodbyes and headed home to New Jersey after that 2016 conference–so many emotions and memories captured in just a few short days. When she returned home and shared stories of her experience at the conference, her three older siblings were amazed by her excitement and enthusiasm, and they were intrigued about the people and experiences that had such a profound effect on their little sister. As a result, they all joined her at the 2018 conference in Cincinnati, Ohio with their spouses, children and significant others.

One of those attending was Eric Brainsky, the fiance of Brianna’s sister Brittany. Several weeks ago, Eric reached out to Families for HoPE to inquire about funding needs for the 2020 Family Conference on Holoprosencephaly. Eric was so moved by his conference experience and the contagious joy Brianna exudes when she talks about her “HoPE family”, Eric wanted to do something special to support and honor Brianna’s love for the HPE families.

As a partner in the law practice Brainsky Levinson, LLC in Massachusetts, Eric proposed that Brainsky Levinson’s annual holiday party for clients, staff and family provide charitable support for Families for HoPE; even more specifically, to provide scholarships funds for HPE families needing financial assistance to attend the 2020 conference.

Shared below is a video of the speech Brianna delivered along with a video presentation Brianna created to share her “HoPE family” with the attendees.  In addition to donations from clients and attendees, Eric also arranged for former 1st baseman and current “Community Ambassador” for the Boston Red Sox, Sam Horn, to attend and assist with a live auction.  At the end of the evening, it was announced that over $10,000 had been raised by the event which would provide scholarships to more than 10 HPE families to attend the conference in June 2020!

Families for HoPE is extremely grateful to the clients and staff of Brainsky Levinson for their generosity and compassion for our HPE families. Thank you to Eric for helping to raise awareness of holoprosencephaly and for giving Brianna this wonderful opportunity to be an ambassador for our organization and a voice for our infants, children, and adults with HPE.

And, Miss Brianna, we are so very proud of you! You inspire us and give us HoPE. We love you very much!

United Way

It’s the time of year when many companies are participating in United Way giving campaigns.

Did you realize that you may be able to donate to Families for HoPE through your annual United Way workplace giving campaign?

Often times, donors are allowed to designate a specific 501(c)(3) organization to receive funding, and we would be thrilled if you would designate Families for HoPE.  Here is some of the information you may need:

Families for HoPE, Inc.
1219 N. Wittfield Street
Indianapolis, IN 46229
888-533-4443
Tax ID Number 20-4541651

Remind your family, friends and co-workers to consider designating Families for HoPE, Inc. as the recipient of their United Way campaign contributions!

Yankee Candle Fundraiser

Yankee Candle Fundraiser – Printable version you can print and share with others!Families for HoPE is partnering with Yankee Candle® Fundraising to help achieve our fundraising goal this year. Yankee Candle is the world’s #1 candle brand, and they offer a wide range of premium candles, fragrances, and décor items at a very wide range of prices. But the most important thing to know is that 40% of every sale goes to us!

To help support us, click on the link below and order items online. Your purchases ship directly to your home and our group receives profit on each and every sale. This promotion is good through Wednesday, January 8, 2020.

READY TO START SHOPPING NOW?

Click on the link below and you are on your way to helping our organization reach its fundraising goals:

Families for Hope, Inc. Yankee Candle Shopping Site

If this link fails to take you to the shopping site, don’t worry. Simply type in http://www.yankeecandlefundraising.com and enter your Group Number 999996799 in the “Start Shopping” box there. Then you can shop for the same Yankee Candle Fundraising items and your purchases will still benefit our organization.

NOW OVER 500 ITEMS ONLINE!

You can also enlist friends and family from out of town to help your organization reach its goals. Simply visit http://www.yankeecandlefundraising.com and click on the “Seller Login” button and fill out the “Sign up to be a seller” form; use your Group Number (above) to register. Their purchases will be delivered directly to them and your organization earns additional profits!

Sell across the country with our Mobile App – it’s an easy way to invite phone and social contacts to shop online! Sales tax and shipping charges may apply to online orders.

Android Users

Do you have an Android device?

We have great news for you!  If you are an AmazonSmile customer, you can now support Families for HoPE, Inc. in the Amazon shopping app on your Android device! Simply follow these instructions to turn on AmazonSmile and start generating donations.

  1. If you have the latest version of the Amazon Shopping App, open the App on your Android device.
  2. View Settings and select AmazonSmile.
  3. Follow the in-App instructions to complete the process.

If you do not have the latest version of the Amazon Shopping App, update your App. Click here for instructions.

(AmazonSmile is not currently available for iOS users, but we have our fingers crossed that it will be available soon!)

Never heard of AmazonSmile?

Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the charitable organization of your choice.

AmazonSmile is the same Amazon you know. Same products, same prices, same service.  To date, Families for HoPE has received nearly $1,500 from the Amazon Smile Foundation.

Support Families for HoPE by starting your shopping at smile.amazon.com!

You shop. Amazon gives.

Colors of HoPE

Hi!  I’m Sarah from Leicester, England.  I was diagnosed as an adult, in 2016, with Lobar HPE an Rhombencephalosynapsis.  I love to sing and was honoured to be contacted by Leslie from Families for HoPE and asked if I would like to record a song for all of our HoPE children and their loved ones.

I chose Colors of the Wind from Disney’s Pocahontas, mainly because who doesn’t love a Disney song?!  I have always loved the lyrics and the message of this song, and Pocahontas is a feisty, headstrong girl who is not afraid to break with convention and defy expectations of those who don’t “look and think like” her.  She also talks about all of Earth’s creatures being “connected to each other”, which for me describes the worldwide Families for HoPE community that I have come to be so proud to be a part of. I was really excited to record this beautiful song and am extremely proud and honoured to share it with you.  I hope you enjoy it!

Lots of love,
Sarah Brown

 

Database Project

Have you heard of Marie Kondo and her method of organization? Marie Kondo is an organizing consultant and author of the best-selling book, The Life-Changing Magic of Tidying Up.  Her method encourages getting rid of physical items that do not bring joy into your life.

At Families for HoPE, we have nearly 1,000 HPE families in our database, and as we review each record in our database, we recognize that every child and HPE family brings great JOY into our organization, our lives, and our world! We are keeping all of your records because you’re important to us, and we want to stay in touch with you.

As a result, we are embarking on a project to review each database record to ensure that we have the updated and most current information for your family.  Volunteer Theressa Newlin (HPE mom to Tyler from Texas) is coordinating this project, and if Theressa reaches out to you, please know that she is doing so on behalf of Families for HoPE.

If you would like to update your family’s contact information or provide new or additional information related to your child, please feel free to reach out to Theressa at Theressa.Newlin@FamiliesforHoPE.org.