Cerebral Palsy Awareness Month

Sponsored in memory of Dr. Leon Root

“Why’d I start Highway of Hope? Simple I’ve been there”

Yehuda Gelman, Founder

Yehuda Gelman Highway of Hope Founder- rare disease clinical trial

Meet our Founder

I was a day old when I had my first surgery. I was born with Dandy Walker Malformation and Hydrocephalus — and at 35 years old, I can now boast of 32 brain surgeries (lucky me ?).

But that’s not all — I was also born with cerebral palsy.

My childhood pediatrician told my parents I’d never ride a two-wheeler bike for more than a block. Just recently, I biked 100 miles on the boardwalk.

I think those of us with rare conditions have an extra dose of fight in us. It takes courage, it takes perseverance, it takes looking fear in the face and moving forward anyway.

But we can’t do it alone.

I started Highway of Hope because I want to give individuals with rare conditions the support they need to stand strong — and look forward to tomorrow. Because take it from me — tomorrow CAN be beautiful.

Yehuda

Highway of Hope Yehuda Gelman Signature- rare disease clinical trial

What makes HOH different from other rare disease organizations?

HOH personalized support- handicapped boy- rare disease clinical trial- orphan drugs

Personalized support

I know how it feels when you’re “just a number” — and when you get generic, “we-tell-it-to-everyone” advice. We listen – but really listen – and get to know you as a person. Then, we explain all of your options and connect you to the doctors, mentors, or legislators you need to connect with.

Patient Empowerment

As a rare disease patient myself, I know how important it is for you to be able to advocate for yourself. Instead of just “throwing out advice,” we take the time to explain everything to you. When you go to doctors, you have the information you need to ask the right questions, understand the treatment options, and make the correct decisions.

HOH patient empowerment- blind boys playing- rare disease clinical trial- help finding a doctor

Patient Empowerment

As a rare disease patient myself, I know how important it is for you to be able to advocate for yourself. Instead of just “throwing out advice,” we take the time to explain everything to you. When you go to doctors, you have the information you need to ask the right questions, understand the treatment options, and make the correct decisions.

“Now I don’t feel so isolated”

“I felt so alone before I found Highway of Hope. Highway of Hope helped me connect with others with my rare disease and provided support when I really needed it most. I now feel more comfortable sharing my story about my disease with others and don’t feel so isolated.”

Marc Yale

Mucous Membrane Pemphigoid

“Yehuda is ALWAYS there for me every step of the way”

A few years ago I was diagnosed with a moderate case of Multiple Sclerosis. I had no knowledge of how much my quality and meaning of life was going to be altered moving forward. It does not matter what time of day, week, month, or year, Yehuda is ALWAYS there for me every step of the way as a true confidant. He truly understands what my body and mind might be going through. For that, I am forever grateful.

D.S.

Multiple Sclerosis

Meet Jake, age 3.

Jake has Hao-Fountain Syndrome

At 6 months old, Jake was choking on baby food, could not support his weight, and wouldn’t make any normal “baby sounds.”

His Mom, Orah, had no idea what was wrong with him.

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Maybe you’re like Orah, who knew something was wrong with her son — but had no idea where to go from there.

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Maybe you’re like Tom, a 24-year old young man with Pulmonary Hypertension, who needed a referral for a high-risk heart surgeon.

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Maybe you’re like Brooke, who wanted her 16-year old daughter to be part of a clinical trial, but was clueless about how to access one.

Meet Jake, age 3.

Jake has Hao-Fountain Syndrome

At 6 months old, Jake was choking on baby food, could not support his weight, and wouldn’t make any normal “baby sounds.”

His Mom, Orah, had no idea what was wrong with him.

et|arrow_triangle-right|E

Maybe you’re like Orah, who knew something was wrong with her son — but had no idea where to go from there.

et|arrow_triangle-right|E

Maybe you’re like Tom, a 24-year old young man with Pulmonary Hypertension, who needed a referral for a high-risk heart surgeon.

et|arrow_triangle-right|E

Maybe you’re like Brooke, who wanted her 16-year old daughter to be part of a clinical trial, but was clueless about how to access one.

Highway of Hope Jake- rare disease clinical trial- expert doctors

Or maybe you’re not like any of them.

Maybe you have your own unique situation and need someone to step in, show you where to go from here, and hold your hand along the way.

At Highway of Hope, we’re here for you in whichever way you need us

HOH Medical Phone Support Icon- rare disease clinical trial- treatment drugs

Medical Support

We connect you with:

  • 1:1 medical mentor
  • Expert doctors
  • Scientists and researchers
  • Clinical trials
HOH Emotional Medical Support Icon- rare disease clinical trial- help finding a doctor

Emotional Support

We connect you with: 

  • 1:1 support mentor
  • Others with your disease
HOH Legislation Support Icon- rare disease clinical trial- expert doctors

Legislation

We help you secure support and funding from:

  • Assemblymen
  • State and federal legislators

Having a rare condition is difficult enough.

You don’t need to navigate it on your own.

Reach out, get help – it’s that simple.

All you have to do is reach out.

Having a rare condition is difficult enough.

You don’t need to navigate it on your own.

Reach out, get help – it’s that simple.

All you have to do is reach out.