Cerebral Palsy Awareness Month

Sponsored in memory of Dr. Leon Root

When you’re just not sure where to go, we give you your next steps

Highway of Hope connects you to whomever YOU need to connect to – whether that’s a mentor, doctor, or legislator.

If you

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Want to try an experimental drug … but don’t know any doctor that offers it

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Crave to connect to someone who’s been there, done that … but don’t know anyone who fits the bill

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Need someone to advocate with the hospital on your behalf … but don’t know where to turn

You’ve come to the right place.

 

If you

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Want to try an experimental drug … but don’t know any doctor that offers it

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Crave to connect to someone who’s been there, done that … but don’t know anyone who fits the bill

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Need someone to advocate with the hospital on your behalf … but don’t know where to turn

You’ve come to the right place.

 

You reach out, we step in.
It’s that simple.

HOH baby girl disease no hair breathing tube- patient advocacy- a patient advocate

We’ve helped over

patients with rare diseases —

and we’re here to help you too

I want to

(Click on each service to get more info)

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Medical Support

Find the right doctor

We’re not “throwing a name out there” and leaving you on your own. We give you personalized doctor referrals based on your situation and needs, and stay in touch with the doctor to monitor your care.

Have someone advocate for me

Many times, you need an experienced and educated professional to speak to your doctor or hospital on your behalf. With experience in hundreds of rare conditions, HOH will step in and give you the peace of mind you crave.

Get answers to my medical questions

We connect you with a “medical mentor” — someone who understands your condition and can support you throughout your entire medical journey.
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Legislation / Research

Have scientists research an experimental drug

Heard about an experimental drug and think it might help you … but there’s not enough research done? We’ll get on the case, find scientists and Universities, and secure funding for the research.

Understand whether I’m a good fit for a clinical trial

Before going through with a clinical trial, it’s essential that you understand the pros and cons. We explain *everything* to you, so you’re empowered to make an educated decision.

Secure funding for a clinical trial

If the scientists are ready to conduct the trial – but don’t have the necessary funds – we’ll collaborate with state and federal legislators to secure the monies.
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Emotional Support

Connect with someone who can support me

We hook you up with someone who knows what you’re going through and can act as a listening ear – or a shoulder to cry on – whenever you need it. Because you can’t fight alone.

Give support to others

If you’re ready to give back to the rare disease community, we need you! We’ll secure speaking gigs so you can share your experience, or hook you up 1:1 with someone at the beginning of their journey.

HOH Medical Clipboard Support icon- patient advocacy- financial advocate

Other

Get wheelchair-friendly transportation to doctor’s appointments

Need help getting around? No problem. We’ll get you where you need to go in a comfortable, spacious vehicle … and send you cookies for the ride (sometimes ?).

Find a job in which I can do meaningful work

We hook up hundreds of individuals with rare diseases with employers who are hiring. You tell us what kind of job you’re looking for, we’ll get on it — and do our very best to help you get it.

Bottom line: We care … and we make things happen

Some recent accomplishments and current projects

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Assisted with a multi-state bone marrow drive, resulting in thousands of new registrants and over 90 transplants.

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Helped raise awareness and funding to start 5 clinical research studies for neurological and musculoskeletal conditions.

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Currently working with the FDA to get a few new and innovative drugs approved.

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Advocated for the Cures Act, which got signed into law in 2016. The Cures Act is designed to help accelerate medical product development to bring new innovations and advances to patients.

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Secured discounts for patients who needed costly medications by working directly with the manufacturer and advocacy organizations.

“Some families experience hope for the first time”

Having a child with a disability, let alone a rare condition, can be devastating for a family. Having a place to go and people to speak to who can provide hope and guidance is a blessing! Highway of Hope is truly a place where some families experience hope for the first time.

Margaret Plack

Physical Therapist

“Highway of Hope guides us and give us confidence”

“When it came to assistive devices for our 3 year old son (with CP), Highway of Hope was there to guide us with a wealth of resources and knowledge. We were very impressed when they followed up with us and helped continue researching the right device. We’re continually in contact with them — they guide us and give us the confidence that we are doing the best for our son.”

Barry F.

Parent of CP patient

“Highway of Hope educates, advocates for, and supports individuals along their journey”

Highway of Hope is literally just that — a highway of hope. When individuals are faced with an injury or an illness, they often do not know which paths are available to them. Highway of Hope takes the patient (and their family) “by the hand”, educates them on the possible paths ahead, and advocates and supports them along their journey towards greater independence, improved quality of life, and better health and function.

Dr Robin Akselrud

OTD, OTR/L, AOTA HCHSIS Leadership and Management Chair

There’s no reason to navigate it all on your own.

There are people who’ve been where you are.
There are people who know what it’s like.

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And there are people who want to give you the practical assistance + emotional support you need.

Reach out, we’re here for you.