Families for HoPE, Inc.

Virtual Conference on HPE is almost here! - Families for HoPE, Inc. On August 11-14, the 2024 Conference on Holoprosencephaly is expanding its reach by convening in a virtual space, allowing access to families from around the world! Register to join this free and exciting, first-time event.

Families for HoPE Welcomes All to the 2024 Conference on Holoprosencephaly – August 11 thru 14 hosted on Microsoft Teams

The 2024 Conference on Holoprosencephaly is expanding its reach by convening in a VIRTUAL space, allowing access to more families from around the world!

For the first time in its history Families for HoPE is making the Conference on Holoprosencephaly easier to attend for families touched by HPE anywhere on the globe. By registering for the conference, anyone, anywhere will be able to join together with other families with just a click on the Teams meeting link provided to registrants.

Registering for the conference – Sunday, August 11 thru Wednesday, August 14 – will provide access to the presentations and speakers scheduled during morning and afternoon sessions each day, allowing all participants independent of location to gain information and insights to enhance parent-to-parent support, increase self-care, learn the keys to successful financial planning to support a child or adult with special needs, and to ensure optimal care for a child with HPE.

The conference program includes presentations by leading medical professionals and geneticists, and others offering information and resources to help families learn, grow and thrive.

This virtual conference is free to all, but you must register for the conference to receive a link to access the event.

Virtual Conference on HPE is almost here! - Families for HoPE, Inc. On August 11-14, the 2024 Conference on Holoprosencephaly is expanding its reach by convening in a virtual space, allowing access to families from around the world! Register to join this free and exciting, first-time event.

Just had a young little lady come by and tell her friend that our booth is 10 out of 10! That’s high praise from her generation

The Build-A-Pen bead bar has been a hit! Lots of cute pens made to raise funds for Families for HoPE!

If you’re in the Sharpsville, Indiana area on Friday, July 5, we hope to see you at the Lights Over Sharpsville 5th of July Family Fun Fair. The all-day event begins at 10am.

If anyone is near Dale, Indiana on Saturday, June 8, stop in at Family Roots Nursery, Inc. and buy a hamburger to support Kal-El’s fundraiser benefitting Families for HoPE.

What is an Anchor of HoPE? It's a community of dedicated supporters who understand that small acts of kindness can create waves of change. A monthly gift, no matter the size, makes a monumental difference. Let's unite to anchor our hope and secure a brighter future for all affected by holoprosencephaly.

Families for HoPE, Inc. We are here to raise awareness of Holoprosencephaly and provide HoPE to families touched by HPE.

Wishing all of our moms a wonderful Mother’s Day! A special hug to all of those who have lost a child making today feel different. Know that your son or daughter is with you always.

It isn’t too early to start planning for the 2024 Families for HoPE Costume Contest.

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Grateful to all those who support us as an Anchor of HoPE. Learn more about them and how they MAKE AN IMPACT on our website www.familiesforhope.org https://familiesforhope.org/make-a-difference/anchors-of-hope-monthly-giving-campaign/

Anchors of HoPE Monthly Giving Campaign - Families for HoPE, Inc. For just $5 a month, you can make a difference as an Anchor of HoPE

"Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all."
Emily Dickinson

You can play a huge role in charting a hope-filled course for families touched by holoprosencephaly. Become an Anchor for HoPE! Visit www.familiesforhope.org Blog today to join us. Your support is greatly needed and appreciated.

Families for HoPE, Inc. You can help us raise awareness of Holoprosencephaly and give hope to families whose lives have been touched by this condition. Click the button below for downloads you can use to raise awareness and share HoPE on your favorite social media platforms.

We are definitely stronger together! Our Holoprosencephaly community proves this true everyday. Thanks, families, for caring and sharing.

Shout out to Michelle Modula and 8 lovely volunteers who made awesome Mom’s Day cards!

Visit www.familiesforhope.org to view the newest issue of HoPE News just published in the Blog!!

Families for HoPE, Inc. You can help us raise awareness of Holoprosencephaly and give hope to families whose lives have been touched by this condition. Click the button below for downloads you can use to raise awareness and share HoPE on your favorite social media platforms.

Dear Families,

I hope this letter finds you well amidst the hustle and bustle of daily life. As many of you are aware, we've experienced a significant change regarding the 2024 Conference, necessitating its move from June to August. I understand the inconvenience and disruption this may cause for many of you, and for that, I extend my sincerest apologies.

The decision to reschedule stemmed from a careful assessment of our needs and obligations. Booking a hotel for a conference entails certain expectations, including the ability to fill a substantial number of rooms. As circumstances unfolded, it became increasingly apparent that meeting this expectation in June might prove challenging.

In response, I took the initiative to renegotiate our contract while exploring all options to accommodate our community's needs. We've secured 52 Family Suites, 15 Grizzly Bear Suites, and 15 Loft Seats at the same price point, ensuring that our accommodations remain accessible to all. Additional details will be shared across our Facebook group pages, so please stay tuned.
For those who were part of the original group of registrants, I urge you to finalize your registration payments by June 1, 2024.

Scholarship recipients will receive notification of their award and amount by May 1, 2024. Should there be surplus funds or a desire for sponsorship within our community, we stand ready to facilitate such opportunities.
New registrants are encouraged to sign up as soon as possible, with a registration fee deadline of June 15, 2024. Cancellation policies have been outlined to ensure fairness and transparency for all involved.

As we continue our efforts to fundraise, I implore you to consider various avenues for support. Whether through sponsoring a family, event, or donating via Text to Give, every contribution makes a meaningful difference. Our mission to spread HoPE to those affected by HPE relies on your generosity and advocacy.

I understand that some may question how we arrived at this point and why we didn't reach out sooner. Rest assured, we've utilized various channels, from merchandise sales to social media broadcasts, to engage our community. However, as a nonprofit organization, we operate within constraints, balancing expenses with our commitment to our cause.

Your feedback, ideas, and suggestions are invaluable to me. Please feel free to reach out via email at [email protected] with any thoughts or concerns. Your input shapes our decisions and strengthens our resolve to serve you better.

Together, let's fill the Great Wolf Lodge with the laughter and camaraderie of our children and families in August. By working collaboratively, we can raise awareness and the necessary funds to ensure the success of our conference and, more importantly, the well-being of our community.

Thank you for your unwavering support and dedication to our shared mission. I eagerly anticipate our continued journey together.

Warm regards,
Steve Harley, President, Families for HoPE, Inc.

Wishing all of our families a Happy Easter! I know for some it’s bittersweet without children and loved ones, but myself and Families for HoPE send our love and support today. May you celebrate the true meaning of Easter today and be with family and friends enjoying the day and time with loved ones. Steve.

Sadly, this is a reality for many of our HPE parents.

UPDATED LINK FOR TONIGHT'S WATCH PARTY

https://hyperbeam.com/i/2Xsp_AE0

New link

The watch party starts in less than 3 hours! Who’s joining?

In the spirit of W***y Wonka, here's a fun quiz for Holoprosencephaly Awareness Week that you can copy and paste about all of your favorite sweet treats:

Hubba Bubba or Big League Chew -
Red Vines or Twizzlers -
Sweet Tarts or Wacky Wafers -
Smarties or candy necklace -
Nerds or Gobstoppers -
Fun Dip or Pixy Sticks -
Skittles or Starburst -
Ring Pop or Dum Dums -
Spree or Runts -
Double Bubble or Bazooka -
Hot Tamales or Atomic Fireballs -
Hershey Kisses or Hershey Hugs -
Cadbury Egg or Peeps -
Jujy Fruits or Juju Bes -
Starburst Originals or Starburst All Pink -
Plain M&Ms or Peanut M&Ms -
Junior Mints or Peppermint Patties -
Gummy Bears or Gummy Worms -
Russell Stover or Whitman’s Sampler -
Tootsie Pop or Blow Pop -
Sour Patch Kids or WarHeads -
Whatchamacallit or Twix -
Circus Peanuts or Jordan Almonds -
Snickers or Baby Ruth -
Reese’s Cups or Reese’s Pieces -
Clark or Mars -
Juicy Fruit or Doublemint Gum -
Mike and Ike or Good and Plenty -
Milk Duds or Rolo -
Heath or Skor -
Payday or Butterfinger -
Almond Joy or Mounds -
Three Musketeers or Milky Way -
Swedish Fish or Dots -
Sugar Babies or Milk Maids -
Laffy Taffy or Now and Later -
Air Heads or Lemonheads -
Jolly Rancher or Lifesavers -
Charleston Chew or Cow Tales -
Crunch or Kit Kat -
Whoppers or Boston Baked Beans -
5th Avenue or 100 Grand -
Mr. Goodbar or Nestle Crunch -
Pop Rocks or Razzles -

Are you ready for Acts of Kindness / Pay It Forward Day? Go to the Families for HoPE website and download the files which have been formatted for printing. https://familiesforhope.org/make-a-difference/hpe-awareness-downloads/

It’s Holoprosencephaly Awareness Week, and Tuesday is all about bubbles. We hope to see many people participating in the HoPE Bubble Blowing Challenge.

Hello Families,

I wanted to take a moment to wish everyone a fun and exciting HPE Awareness Week! We have a lot of activities planned and underway. I have seen some of our families posting events they are doing, and I love it! This week is our chance to raise awareness of HPE and support each other in our journeys. The overall W***y Wonka theme to the week should offer up some fun and unique opportunities for you to share your HPE journey. I hope you all can join us Thursday evening for our viewing party online of the original Will Wonka and the Chocolate Factory.

I have had families reach out to me lately about what Families for HoPE is working on and how they can participate. Well, I am glad you asked. Below is just a snip-it of what we are working on and HoPE you will help us with.

We have been actively working on initiatives to address these challenges our organization faces in awareness, fundraising and education of medical professionals. We have created a message specific proposal to engage potential donors and incorporate elements into our marketing and educational materials.

Additionally, we're introducing the Ambassadors of HoPE program, where families from diverse backgrounds partner with us to raise awareness, share their stories, and support our programs, including the conference. It's time for us to step out of the shadows and amplify our voices within the community.

Furthermore, we're prioritizing mental health awareness, recognizing the significant burden of caregiver burnout among our families. We're also exploring avenues to provide education and resources for navigating the educational journey and planning, including addressing concerns about long-term care and guardianship.

These initiatives are still in their early stages of development, but they reflect our commitment to serving the needs of our community comprehensively. We understand the challenges firsthand, as many of us juggle caregiving responsibilities alongside other life commitments. Personally, I've experienced the hurdles of health struggles and disability, further emphasizing the importance of our collective support network.

I believe wholeheartedly in Families for HoPE and its mission. Since its inception, I've witnessed its growth and impact, and I remain dedicated to its success. Together, let's continue to navigate these challenges and work towards a future where our voices are heard, our needs are met, and our community thrives.

Thank you for your understanding, patience, and ongoing support.

Warm regards,

Steve Harley, President, Families for HoPE, Inc.