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!
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.
Families for HoPE is so proud to celebrate the achievements of 16 year-old Joshua Howard from St. Petersburg, Florida.
Joshua was selected by St. Petersburg College to receive the Dr. Vilma Fernandez-Zalupski Latino Academic Excellence Award for 2019-2020. This prestigious award recognizes students in grades 10 through 12 with a grade point average of 3.0 or above. Joshua received this award in appreciation of his outstanding work and to encourage his continued academic growth and success.
In 1979, Dr. Vilma Fernandez-Zalupski was the first woman in Florida to be appointed a community college provost. She directed SPC’s Clearwater Campus for nearly 16 years before retiring in January 1995.
Describing her son as very lovable and friendly, Joshua’s mother, Leslie Camacho, shared that Joshua is quite independent, and even though he uses a wheelchair, “that doesn’t stop him from anything. He’s amazing!”
When Joshua isn’t focused on his school work, he loves listening to reggaetón music and playing football and basketball on the Xbox. Residing in Florida, Joshua and his family are in close proximity to several Florida theme parks where Joshua fearlessly rides any and all rollercoasters.
Joshua will be recognized for his award in a virtual ceremony hosted by St. Petersburg College to be held on Monday, October 19. Way to go, Joshua!
It is with broken hearts that we share the news that our beloved board member, Heather Dawn Rinard, has succumbed to her brave battle with cancer. Heather leaves behind her loving husband Matt, son Gavin, and daughters Sami, Izzy and Charliedawn.
Heather joined our HPE family with the birth of her daughter, Charliedawn in 2012, and she joined our board of directors in 2015. As an all-volunteer organization, Heather wore two hats for our organization—one as a director with governance and fiduciary responsibilities and the other with daily management of our social media accounts, website and robust online support network.
Heather became the first point of contact for hundreds of our HPE families, and as a result, Heather formed friendships with HPE families from around the globe. She helped find resources and shared tools which enabled families to become confident advocates for their children.
With her creativity and zeal for life, she played a primary role in supporting and promoting our annual HPE Awareness Week, Brackets For Good Fundraising Tournament, annual Halloween Costume Contest, and engaging HPE families in fun ways.
During her time on the Families for HoPE board, Heather generously gave of her time, talent and treasure. She and Charliedawn helped raise thousands of dollars for our organization, and in 2019, she organized a successful “Walk ‘n’ Roll” event in Arizona to support Families for HoPE. In 2017, she planned and hosted a retreat in Phoenix for 19 HPE moms from across the U.S.
Heather’s absence in our organization and our HPE community is painful for us all, but we know that she is free from the pain that besieged her body over the past year. Her impact on us all will be felt for generations to come.
We love you always, Heather.
(Please feel free to comment below to express your grief, write a tribute, or share memories of Heather and the impact she has made on your life.)
Over the past several months, the board of directors of Families for HoPE has been closely monitoring the coronavirus pandemic with the health, safety and well-being of our HPE families in mind. Of particular concern is the instability of the pandemic, the most-recent evidence that children may be vulnerable to a multi-system inflammatory syndrome triggered by COVID-19 infections, and the economic impact on our HPE families.
After careful consideration, we have arrived at the difficult decision to cancel the Family Conference on Holoprosencephaly which had been rescheduled for June 2021 (postponed from June 2020). We are heartbroken to make this decision as in-person conferences hold so much value for the HPE families who are able to attend, but we believe this is the best choice at this time. Families currently registered for the canceled conference will be contacted in the coming days to arrange a refund of registration fees.
Please know that there is still much reason to have hope, as we intend to resume our conference in 2022. Until then, we are working on a plan for support and fellowship for our fellow HPE families, and we are excited to bring new offerings to our HPE community through virtual technology at no charge to you!
Utilizing the Zoom platform, we will bring you a series of live and recorded webinar presentations from several of our conference speakers. The first webinar will feature Dr. Paul Kruszka with the National Institutes of Health who will share genetic research discoveries and breakthroughs made in 2019. We will be sending emails soon for the dates and times for these webinars and how to register. The webinars will be recorded, so if you are unable to view the live presentation/discussion, they will be uploaded to the Families for HoPE website for future viewing at your convenience.
We also will be offering virtual opportunities for individuals to come together from the safety of their own homes. The Families for HoPE Parent Advisory Committee is developing a plan and schedule to incorporate group video chats for informal communication and virtual interaction among our HPE families. Stay tuned for email updates in your inbox during the coming days!
Families for HoPE is committed to developing new ways to continue its mission to support, encourage and educate HPE families during this unprecedented time. Please watch for upcoming surveys seeking your input and feedback as we expand our programs and offerings. Your help and support has been and will continue to be critical in making it through this difficult period.
We appreciate your trust in our organization and look forward to serving you now and in the future. If you have any questions, please do not hesitate to reach out to us at info@FamiliesforHoPE.org.
The Board of Directors of Families for HoPE, Inc.
Leslie Harley, Cheryl Lehman, Heather Rinard, Roxanne Steele, Josh Timmerman and Becky Wilson
Due to the Corona Virus crisis in the United States, the board of directors of Families for HoPE, Inc. have made the decision to postpone the Family Conference on Holoprosencephaly to be held in June 2020.
We have worked with Great Wolf Lodge & Conference Center in Mason, Ohio to reschedule the conference and have secured the dates of June 13-17, 2021.
If you were registered for the 2020 conference, your registration will remain valid for the 2021 conference and any registration fees paid to date will be applied to the 2021 conference. If you prefer to cancel your registration, we will issue a refund for registration fees you have paid.
We know that the current crisis brings much uncertainty, so please know that our thoughts and hearts are with all of our HPE families. Stay healthy, friends.
I was a baby when Rhonda came onto my life, so I don’t remember when I met her, but she was my first BFF. Because my mom was a working mother, Rhonda’s mother Hattie was hired to be my babysitter, and I spent nearly every weekday at Hattie’s house for seven years. It was a carefree time, and there are so many memories I have of my childhood with Hattie and Rhonda. Playing in the backyard and being chased by the chickens; plucking berries from the mulberry bushes growing wild along the railroad tracks; sitting in a metal lawn chair by the garden snapping green beans; the howling of the coon dogs out back as they awaited dinner time. The hissing sound coming from the kitchen as dinner was cooking in the pressure cooker; glass canning jars filled with jellies, tomatoes, beans. Eating Hattie’s macaroni and tomatoes. The sizzle and welding sparks I’d see through the open garage door where Hattie’s husband worked on tractor engines. I even learned to tie my shoes at Hattie’s house.
But Rhonda was where my attention was. If I remember correctly, Rhonda was 6 years older than I was, and I looked up to her. Rhonda loved wearing rings, and she was one of those people who wore rings on every finger. Sometimes when grown ups came to visit, they would bring a new ring for Rhonda because they knew she liked them so much, and we would spend hours huddled together scrutinizing every piece of jewelry in the Service Merchandise catalog marking and circling our favorites. We did the same with the Christmas catalogs from JC Penney and Sears. Listening to records or the radio in her bedroom while looking at Teen Beat magazines and her pointing out excitedly when she laid claim on someone as her “boyfriend”.
I remember a bus picking her up in the mornings to take her to school, but I couldn’t go because I wasn’t old enough yet. I was fascinated by her notebooks. She would often sit for hours filling pages and pages of spiral notebooks with what appeared to be cursive or shorthand, but I didn’t know what it said because I couldn’t read yet.
I vividly remember one particular day in my life with Rhonda. We were tumbling and turning somersaults in the living room, and I noticed that Rhonda wasn’t doing them correctly. I would demonstrate for her, and I remember saying to her with frustration and confusion, “You’re older than me so you should be able to do these better than me.” Hattie who was in the next room and overheard our exchange came and sat down beside me on the sofa and asked, “Leslie, hasn’t your mom or dad talked to you about Rhonda being different? She may be older than you, but she can’t do some of the things that you can do.” Different? Even though I was too young to truly comprehend what she was saying, that moment was pivotal. On that day, my innocence was lost and the world looked different.
What I grew to learn was that Rhonda had been affected with mental retardation. That’s what we called it back then. Today, we have progressed to terminology such as Intellectual Disability or Developmental Disability.
Growing up with Rhonda had a profound effect on my life, my personality, and my heart, and 25+ years later when I learned that my unborn baby would be born with a profound intellectual disability, I realized that Rhonda had been more than just my childhood friend; she was my heart’s greatest teacher.
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!