{"id":137,"date":"2020-08-25T18:46:04","date_gmt":"2020-08-25T18:46:04","guid":{"rendered":"https:\/\/hwofhope.org\/?page_id=137"},"modified":"2021-02-09T15:31:15","modified_gmt":"2021-02-09T15:31:15","slug":"about","status":"publish","type":"page","link":"https:\/\/hwofhope.org\/about\/","title":{"rendered":"About"},"content":{"rendered":"

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%22Why’d I start Highway of Hope? Simple \u2014<\/span> I’ve been there%22<\/h1>\n

” content_phone=”<\/p>\n

%22Why’d I start Highway of Hope?
Simple \u2014<\/span> I’ve been there%22<\/h1>\n

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“Why’d I start Highway of Hope? Simple \u2014<\/span> I’ve been there”<\/h1>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.7.1″ background_color=”rgba(255,255,255,0.74)” width_tablet=”90%” width_phone=”90%” width_last_edited=”on|phone” max_width=”1000px” custom_margin=”|auto||10%|false|false” custom_padding=”0px|50px|20px|50px|false|true” custom_padding_tablet=”|30px||30px|false|true” custom_padding_phone=”|20px||20px|false|true” module_alignment_tablet=”center” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” border_color_all=”#1b123d”][et_pb_column type=”4_4″ _builder_version=”4.4.7″ custom_padding_tablet=”|||30px|false|false” custom_padding_last_edited=”off|desktop”][et_pb_text _builder_version=”4.5.7″ _module_preset=”76248d95-4e58-4fb5-9d93-5c8517518ce2″ width_tablet=”” width_phone=”” width_last_edited=”on|tablet” max_width=”550px” max_width_tablet=”” max_width_phone=”” max_width_last_edited=”on|phone” module_alignment=”left” custom_padding=”||3px||false|false” custom_padding_last_edited=”off|desktop” module_alignment_tablet=”” module_alignment_phone=”” module_alignment_last_edited=”on|desktop” locked=”off”]<\/p>\n

Yehuda Gelman, Founder<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” admin_label=”Video” module_id=”section6″ _builder_version=”4.7.1″ _module_preset=”2dec04d7-6b65-4ef8-8493-43ec1c4687e5″ background_enable_color=”off” custom_padding=”100px||100px||true|false” custom_padding_tablet=”” custom_padding_phone=”50px||50px||true|false”][et_pb_row column_structure=”1_3,2_3″ use_custom_gutter=”on” gutter_width=”2″ disabled_on=”off|off|off” _builder_version=”4.6.6″ _module_preset=”default” background_enable_color=”off” module_alignment=”center” custom_margin=”|auto|0px|auto|false|true” custom_padding=”0px||0px||true|false”][et_pb_column type=”1_3″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px”][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/11\/20200214_154913.jpg” alt=”Yehuda Gelman Highway of Hope Founder- rare disease clinical trial” title_text=”20200214_154913″ align_tablet=”center” align_phone=”” align_last_edited=”on|desktop” _builder_version=”4.8.2″ _module_preset=”default” background_color=”rgba(0,0,0,0)” width=”100%” max_height=”300px” custom_padding=”|0px||0px||” animation_style=”zoom” animation_intensity_zoom=”2%” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][et_pb_column type=”2_3″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px”][et_pb_text _builder_version=”4.7.3″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font_size=”16px” header_2_font=”|900|||||||” header_2_text_color=”#0e004a” header_2_font_size=”24px” header_4_font_size=”24px” custom_padding=”|||0px|false|false” custom_padding_tablet=”35px||||false|false”]<\/p>\n

\n

Meet our Founder<\/strong><\/h2>\n

I was a day old when I had my first surgery. I was born with Dandy Walker Malformation and Hydrocephalus \u2014 and at 35 years old, I can now boast of 32 brain surgeries (lucky me ?).<\/p>\n

But that\u2019s not all \u2014 I was also born with cerebral palsy.<\/p>\n

My childhood pediatrician told my parents I\u2019d never ride a two-wheeler bike for more than a block. Just recently, I biked 100 miles on the boardwalk.<\/p>\n

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.<\/p>\n

But we can\u2019t do it alone.<\/p>\n

I started Highway of Hope because I want to give individuals with rare conditions the support they need to stand strong \u2014 and look forward to tomorrow. Because take it from me \u2014 tomorrow CAN be beautiful.<\/p>\n

Yehuda<\/p>\n<\/div>\n

[\/et_pb_text][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/signature.png” alt=”Highway of Hope Yehuda Gelman Signature- rare disease clinical trial” title_text=”signature” align_tablet=”left” align_phone=”” align_last_edited=”on|tablet” _builder_version=”4.7.7″ _module_preset=”default” max_width=”175px” module_alignment_tablet=”left” module_alignment_phone=”” module_alignment_last_edited=”on|tablet”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” next_background_color=”#ffffff” admin_label=”Services” module_id=”section4″ module_class=”icons-section” _builder_version=”4.7.1″ background_color=”#f7f8f9″ custom_margin=”||||false|false” custom_padding=”100px||173px||false|false” custom_padding_tablet=”90px||75px||false|false” custom_padding_phone=”50px||100px||false|false” bottom_divider_style=”arrow”][et_pb_row make_equal=”on” disabled_on=”off|off|off” admin_label=”Row” _builder_version=”4.5.7″ background_enable_color=”off” module_alignment=”center” custom_margin=”||0px||false|false” custom_padding=”20px||65px||false|true” locked=”off”][et_pb_column type=”4_4″ _builder_version=”4.4.6″][et_pb_text _builder_version=”4.6.5″ _module_preset=”ab176420-f184-4b7f-b1fc-530aaa900c03″ text_font=”||||||||” text_font_size=”16px” header_2_font_size=”26px” header_3_text_color=”#0e004a” custom_margin=”||||false|false” custom_padding=”||||false|false” custom_padding_tablet=”35px||||false|false” locked=”off”]<\/p>\n

What makes HOH different<\/span> from other rare disease organizations?<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” make_equal=”on” disabled_on=”off|off|off” _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” module_alignment=”center” custom_margin=”|auto|0px|auto|false|true” custom_padding=”0px||35px||false|false”][et_pb_column type=”1_2″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px”][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/personailized-support2.jpg” alt=”HOH personalized support- handicapped boy- rare disease clinical trial- orphan drugs” title_text=”personailized-support2″ align_tablet=”center” align_phone=”” align_last_edited=”on|desktop” _builder_version=”4.8.2″ _module_preset=”default” max_height=”300px” animation_style=”zoom” animation_intensity_zoom=”2%” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px”][et_pb_text _builder_version=”4.7.1″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font=”||||||||” text_font_size=”18px” header_line_height=”1.8em” header_3_font_size=”26px” header_3_line_height=”1.8em” custom_padding_tablet=”35px||||false|false” header_3_font_size_tablet=”” header_3_font_size_phone=”26px” header_3_font_size_last_edited=”on|phone”]<\/p>\n

\n

Personalized support<\/h3>\n

I know how it feels when you\u2019re \u201cjust a number\u201d \u2014 and when you get generic, \u201cwe-tell-it-to-everyone\u201d advice. We listen \u2013 but really listen \u2013 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.<\/span><\/p>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” make_equal=”on” disabled_on=”off|off|off” _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” module_alignment=”center” custom_margin=”35px|auto|0px|auto|false|true” custom_padding=”0px||0px||true|false”][et_pb_column type=”1_2″ _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px” custom_css_main_element_last_edited=”on|tablet” custom_css_main_element_tablet=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;||margin-bottom:0 !important;”][et_pb_text disabled_on=”on|on|off” _builder_version=”4.7.1″ _module_preset=”default” text_font=”||||||||” text_font_size=”18px” header_3_font=”Heebo|900|||||||” header_3_text_color=”#0e004a” header_3_font_size=”26px” header_3_line_height=”1.8em” custom_padding=”||||false|false” custom_padding_tablet=”35px||||false|false” custom_padding_phone=”” custom_padding_last_edited=”on|phone” header_3_font_size_tablet=”” header_3_font_size_phone=”32px” header_3_font_size_last_edited=”on|desktop”]<\/p>\n

\n

Patient Empowerment<\/h3>\n

As a rare disease patient myself, I know how important it is for you to be able to advocate for yourself. Instead of just \u201cthrowing out advice,\u201d 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.<\/span><\/p>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px”][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/patient-empowerment.jpg” alt=”HOH patient empowerment- blind boys playing- rare disease clinical trial- help finding a doctor” title_text=”patient-empowerment” align=”right” align_tablet=”center” align_phone=”” align_last_edited=”on|desktop” _builder_version=”4.8.2″ _module_preset=”default” max_height=”300px” animation_style=”zoom” animation_intensity_zoom=”2%” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” sticky_enabled=”0″][\/et_pb_image][et_pb_text disabled_on=”off|off|on” _builder_version=”4.7.1″ _module_preset=”default” text_font=”||||||||” text_font_size=”18px” header_line_height=”1.8em” header_3_font=”Heebo|900|||||||” header_3_font_size=”26px” header_3_line_height=”1.8em” header_3_font_size_tablet=”” header_3_font_size_phone=”26px” header_3_font_size_last_edited=”on|phone”]<\/p>\n

\n

Patient Empowerment<\/h3>\n

As a rare disease patient myself, I know how important it is for you to be able to advocate for yourself. Instead of just \u201cthrowing out advice,\u201d 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.<\/span><\/p>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ module_id=”section8″ module_class=”testimonials” _builder_version=”4.7.1″ _module_preset=”default” background_color=”#ffffff” custom_padding=”50px||50px||true|false”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”2″ make_equal=”on” disabled_on=”off|off|off” _builder_version=”4.7.1″ width_tablet=”” width_phone=”90%” width_last_edited=”on|phone” locked=”off”][et_pb_column type=”1_2″ _builder_version=”4.7.1″ background_color=”#ffffff” custom_padding=”35px|50px|50px|50px|false|true” custom_padding_tablet=”” custom_padding_phone=”35px|35px|35px|35px|true|true” custom_padding_last_edited=”on|phone” custom_css_main_element=”width:56% !important;||overflow:visible !important;” border_radii=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_blur=”40px” box_shadow_color=”rgba(0,0,0,0.1)” custom_padding__hover=”|||” custom_css_main_element_last_edited=”on|phone” custom_css_main_element_tablet=”width:100% !important;||overflow:visible !important;”][et_pb_testimonial author=”Marc Yale” job_title=”Mucous Membrane Pemphigoid” quote_icon_color=”#ec7a55″ quote_icon_background_color=”#ffffff” _builder_version=”4.7.1″ _module_preset=”70bab68d-4b9b-4685-bbf6-ed15c1d18e2d” body_line_height=”1.8em”]<\/p>\n

“Now I don’t feel so isolated”<\/strong><\/h3>\n

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

[\/et_pb_testimonial][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.7.1″ background_color=”#ffffff” custom_padding=”35px|35px|35px|35px|true|true” custom_css_main_element=”width:56% !important;||overflow:visible !important;” border_radii=”on|10px|10px|10px|10px” box_shadow_style=”preset1″ box_shadow_blur=”40px” box_shadow_color=”rgba(0,0,0,0.1)” custom_padding__hover=”|||” custom_css_main_element_last_edited=”on|phone” custom_css_main_element_tablet=”width:100% !important;||overflow:visible !important;”][et_pb_testimonial author=”D.S.” job_title=”Multiple Sclerosis ” quote_icon_color=”#ec7a55″ quote_icon_background_color=”#ffffff” use_icon_font_size=”on” icon_font_size=”50px” _builder_version=”4.6.5″ body_font=”||||||||” body_text_color=”#0e004a” body_line_height=”1.8em” author_font=”Heebo|700|||||||” author_text_color=”#0e004a” author_line_height=”1em” position_font=”Heebo||||||||” use_background_color=”off” custom_css_before=”margin-top:-37px !important;”]<\/p>\n

\u201cYehuda is ALWAYS there for me every step of the way\u201d<\/strong><\/h3>\n

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. <\/span>It does not matter what time of day, week, month, or year,<\/b> 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. <\/span>For that, I am forever grateful.<\/b><\/p>\n

[\/et_pb_testimonial][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|desktop” admin_label=”Video” _builder_version=”4.7.1″ _module_preset=”2dec04d7-6b65-4ef8-8493-43ec1c4687e5″ custom_margin=”||0px||false|false” custom_padding=”100px||100px||false|false” custom_padding_tablet=”100px||50px||false|false” custom_padding_phone=”50px||50px||false|false” custom_css_main_element=”padding-bottom:100px !important;” custom_css_main_element_last_edited=”on|phone” custom_css_main_element_tablet=”padding-bottom:50px !important;”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” make_equal=”on” disabled_on=”off|off|on” _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” module_alignment=”center” custom_margin=”|auto|0px|auto|false|true” custom_padding=”0px||0px||true|false”][et_pb_column type=”1_2″ _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px” custom_css_main_element_last_edited=”on|phone” custom_css_main_element_tablet=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;||width: 50%;”][et_pb_text _builder_version=”4.7.3″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font=”Open Sans|700|||||||” header_2_font=”Heebo|900|||||||” header_2_font_size=”34px” width_tablet=”60%” width_phone=”” width_last_edited=”on|phone” custom_margin=”||6px||false|false” custom_padding=”2px||15px||false|true” custom_padding_tablet=”0px|0px||0px|false|true” text_font_size_tablet=”20px” text_font_size_phone=”19px” text_font_size_last_edited=”on|phone” header_2_font_size_tablet=”” header_2_font_size_phone=”32px” header_2_font_size_last_edited=”on|phone” module_alignment_tablet=”center” module_alignment_phone=”center” module_alignment_last_edited=”on|tablet” custom_css_main_element=”min-width:500px !important;”]<\/p>\n

Meet Jake, age 3.<\/h2>\n

Jake has <\/b>Hao-Fountain Syndrome<\/b><\/p>\n

[\/et_pb_text][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/09\/image0.jpeg” title_text=”image0″ show_bottom_space=”off” align=”center” show_bottom_space_last_edited=”off|tablet” align_tablet=”center” align_phone=”left” align_last_edited=”on|tablet” disabled_on=”off|on|on” _builder_version=”4.7.1″ _module_preset=”default” background_color=”#f7f8f9″ max_height=”600px” max_height_tablet=”235px” max_height_phone=”” max_height_last_edited=”on|phone” custom_margin_tablet=”auto||0px||false|false” custom_margin_phone=”” custom_margin_last_edited=”on|tablet” animation_style=”zoom” animation_intensity_zoom=”2%” border_radii=”on|10px|10px|10px|10px”][\/et_pb_image][et_pb_text _builder_version=”4.7.1″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font_size=”18px” header_2_font=”|900|||||||” header_2_text_color=”#0e004a” custom_padding_tablet=”||||false|false” custom_padding_phone=”25px||||false|false”]<\/p>\n

At 6 months old, Jake was choking on baby food, could not support his weight, and wouldn\u2019t make any normal \u201cbaby sounds.\u201d<\/span><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px” custom_css_main_element_last_edited=”on|tablet” custom_css_main_element_tablet=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;||width: 50%;”][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/09\/image0.jpeg” title_text=”image0″ show_bottom_space=”off” align=”center” show_bottom_space_last_edited=”off|tablet” align_tablet=”center” align_phone=”left” align_last_edited=”on|tablet” disabled_on=”on|off|off” _builder_version=”4.7.1″ _module_preset=”default” background_color=”#f7f8f9″ max_height=”600px” max_height_tablet=”235px” max_height_phone=”” max_height_last_edited=”on|phone” custom_margin_tablet=”auto||0px||false|false” custom_margin_phone=”” custom_margin_last_edited=”on|tablet” animation_style=”zoom” animation_intensity_zoom=”2%” border_radii=”on|10px|10px|10px|10px”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” make_equal=”on” disabled_on=”off|off|on” _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” width_tablet=”” width_phone=”” width_last_edited=”on|phone” module_alignment=”center” custom_margin=”|auto|0px|auto|false|true” custom_padding=”0px||0px||true|false”][et_pb_column type=”1_2″ _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_padding=”||0px||false|false” custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px”][et_pb_text _builder_version=”4.7.1″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font_size=”18px” header_2_font=”|900|||||||” header_2_text_color=”#0e004a” custom_padding_tablet=”2px||||false|false”]<\/p>\n

His Mom, Orah, had no idea what was wrong with him.<\/p>\n

[\/et_pb_text][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” icon_font_size_tablet=”” icon_font_size_phone=”40px” icon_font_size_last_edited=”on|phone” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” custom_padding_phone=”0px|0px|0px|0px|true|true” transform_styles__hover_enabled=”on|hover” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop” transform_scale__hover=”120%|120%”]<\/p>\n

Maybe you\u2019re like Orah, who knew something was wrong with her son \u2014 but had no idea where to go from there.<\/span><\/h3>\n

[\/et_pb_blurb][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” icon_font_size_tablet=”” icon_font_size_phone=”40px” icon_font_size_last_edited=”on|phone” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” custom_padding_phone=”0px|0px|0px|0px|true|true” transform_styles__hover_enabled=”on|hover” transform_scale__hover=”120%|120%” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop”]<\/p>\n

Maybe you’re like Tom, a 24-year old young man with Pulmonary Hypertension, who needed a referral for a high-risk heart surgeon.<\/span><\/h3>\n

[\/et_pb_blurb][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” icon_font_size_tablet=”” icon_font_size_phone=”40px” icon_font_size_last_edited=”on|phone” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” custom_padding_phone=”0px|0px|0px|0px|true|true” transform_styles__hover_enabled=”on|hover” transform_scale__hover=”120%|120%” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop”]<\/p>\n

Maybe you\u2019re like Brooke, who wanted her 16-year old daughter to be part of a clinical trial, but was clueless about how to access one.<\/span><\/h3>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_padding=”||0px||false|false” custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px”][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” make_equal=”on” disabled_on=”on|on|off” _builder_version=”4.7.1″ _module_preset=”default” background_enable_color=”off” module_alignment=”center” custom_margin=”|auto|0px|auto|false|true” custom_padding=”0px||0px||true|false”][et_pb_column type=”1_2″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||margin-right:auto;||margin-left:auto !important;” border_radii=”on|3px|3px|3px|3px”][et_pb_text _builder_version=”4.7.3″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font=”Open Sans|700|||||||” header_2_font=”Heebo|900|||||||” header_2_font_size=”34px” width_tablet=”60%” custom_padding=”2px||15px||false|true” custom_padding_tablet=”0px|0px|15px|0px|false|true” text_font_size_tablet=”20px” header_2_font_size_tablet=”” header_2_font_size_phone=”32px” header_2_font_size_last_edited=”on|phone” module_alignment_tablet=”center” module_alignment_phone=”center” module_alignment_last_edited=”on|tablet” custom_css_main_element=”min-width:500px !important;”]<\/p>\n

Meet Jake, age 3.<\/h2>\n

Jake has <\/b>Hao-Fountain Syndrome<\/b><\/p>\n

[\/et_pb_text][et_pb_text _builder_version=”4.5.7″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_font_size=”18px” header_2_font=”|900|||||||” header_2_text_color=”#0e004a” custom_padding_tablet=”35px||||false|false”]<\/p>\n

At 6 months old, Jake was choking on baby food, could not support his weight, and wouldn\u2019t make any normal \u201cbaby sounds.\u201d<\/span><\/p>\n

His Mom, Orah, had no idea what was wrong with him.<\/p>\n

[\/et_pb_text][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” transform_styles__hover_enabled=”on|hover” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop” transform_scale__hover=”120%|120%”]<\/p>\n

Maybe you\u2019re like Orah, who knew something was wrong with her son \u2014 but had no idea where to go from there.<\/span><\/h3>\n

[\/et_pb_blurb][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” transform_styles__hover_enabled=”on|hover” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop” transform_scale__hover=”120%|120%”]<\/p>\n

Maybe you’re like Tom, a 24-year old young man with Pulmonary Hypertension, who needed a referral for a high-risk heart surgeon.<\/span><\/h3>\n

[\/et_pb_blurb][et_pb_blurb use_icon=”on” font_icon=”%%36%%” use_icon_font_size=”on” icon_font_size=”60px” _builder_version=”4.7.3″ _module_preset=”f425e9b0-406e-4534-bb82-b442d787e8df” body_text_color=”#0e004a” body_font_size=”18px” module_alignment=”left” transform_styles__hover_enabled=”on|hover” transform_scale__hover_enabled=”on|hover” transform_translate__hover_enabled=”on|desktop” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop” transform_scale__hover=”120%|120%”]<\/p>\n

Maybe you\u2019re like Brooke, who wanted her 16-year old daughter to be part of a clinical trial, but was clueless about how to access one.<\/span><\/h3>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.5.7″ _module_preset=”default” background_enable_color=”off” z_index=”59″ custom_css_main_element=”overflow-x:visible !important;||overflow-y:visible !important;||\/*margin-right:auto;||margin-left:auto !important;*\/||margin:auto;” border_radii=”on|3px|3px|3px|3px”][et_pb_image src=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/09\/image0.jpeg” alt=”Highway of Hope Jake- rare disease clinical trial- expert doctors” title_text=”image0″ show_bottom_space=”off” align=”center” show_bottom_space_last_edited=”off|tablet” align_tablet=”left” align_phone=”left” align_last_edited=”on|tablet” disabled_on=”on|on|off” _builder_version=”4.8.2″ _module_preset=”default” background_color=”#f7f8f9″ max_height=”600px” max_height_tablet=”235px” max_height_phone=”” max_height_last_edited=”on|phone” custom_margin_tablet=”auto||0px||false|false” custom_margin_phone=”” custom_margin_last_edited=”on|tablet” animation_style=”zoom” animation_intensity_zoom=”2%” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Section” _builder_version=”4.5.7″ _module_preset=”default” background_color=”#0e004a” background_image=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/09\/Rectangle-1-copy-2-mobile.png” background_size=”initial” background_position=”top_center” custom_margin=”||||false|false”][et_pb_row _builder_version=”4.7.1″ _module_preset=”default” width=”50%” width_tablet=”78%” width_phone=”” width_last_edited=”on|phone” module_alignment=”center”][et_pb_column type=”4_4″ _builder_version=”4.5.7″ _module_preset=”default”][et_pb_text _builder_version=”4.7.3″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ text_text_color=”#ffffff” text_font_size=”18px” header_3_text_color=”#ec7a55″ header_4_font=”Heebo|900|||||||” header_4_text_color=”#ec7a55″ header_4_font_size=”34px” width_tablet=”” width_phone=”85%” width_last_edited=”on|phone” module_alignment=”center” custom_padding=”25px||||false|false” custom_padding_tablet=”||25px|0px|false|false” custom_padding_phone=”” custom_padding_last_edited=”on|tablet” header_4_font_size_tablet=”” header_4_font_size_phone=”32px” header_4_font_size_last_edited=”on|phone” locked=”off”]<\/p>\n

Or maybe you’re not like any of them.<\/h4>\n

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.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” admin_label=”Services” module_id=”section4″ module_class=”icons-section-about” _builder_version=”4.6.5″ background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”100px||75px||false|false” custom_padding_tablet=”90px||75px||false|false” custom_padding_phone=”71px||||false|false”][et_pb_row make_equal=”on” disabled_on=”off|off|off” _builder_version=”4.5.7″ background_enable_color=”off” module_alignment=”center” custom_margin=”||0px||false|false” custom_padding=”20px||3px||false|true” locked=”off”][et_pb_column type=”4_4″ _builder_version=”4.4.6″][et_pb_text _builder_version=”4.7.3″ _module_preset=”e9ea8985-bf1d-4706-afa2-2c6c688422f7″ header_text_color=”#ffffff” header_2_font=”Heebo|900|||||||” header_2_text_align=”center” header_2_text_color=”#0e004a” custom_margin=”0px||0px||false|false” custom_padding=”0px||0px||false|false” custom_padding_tablet=”|||0px|false|false” custom_padding_last_edited=”off|desktop” header_2_text_align_tablet=”” header_2_text_align_phone=”left” header_2_text_align_last_edited=”on|phone” locked=”off”]<\/p>\n

At Highway of Hope, we\u2019re here for you \u2014<\/span> in whichever way you need us<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_3,1_3,1_3″ use_custom_gutter=”on” gutter_width=”2″ custom_padding_last_edited=”off|desktop” disabled_on=”off|off|off” _builder_version=”4.7.1″ background_enable_color=”off” width=”70%” width_tablet=”90%” width_phone=”80%” width_last_edited=”on|phone” module_alignment=”center” custom_margin=”73px|auto||auto|false|false” custom_margin_tablet=”” custom_margin_phone=”25px|auto||auto|false|false” custom_margin_last_edited=”on|tablet” custom_padding=”3px|0px|0px|0px|false|true” custom_padding_tablet=”50px|30px|50px|30px|true|true” custom_padding_phone=”40px||40px||true|true” locked=”off” custom_css_main_element_last_edited=”on|tablet”][et_pb_column type=”1_3″ _builder_version=”4.7.1″ background_enable_color=”off” custom_css_main_element_last_edited=”on|tablet” custom_css_main_element_tablet=”width:33% !important;” custom_css_main_element_phone=”width:100% !important;”][et_pb_blurb title=”Medical Support<\/span>” image=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/Asset-42.png” alt=”HOH Medical Phone Support Icon- rare disease clinical trial- treatment drugs” icon_alignment=”left” content_max_width=”100%” image_last_edited=”off|desktop” _builder_version=”4.8.2″ header_level=”h3″ header_font=”Heebo|900|||||||” header_text_color=”#0e004a” header_font_size=”22px” header_line_height=”1.3em” body_text_color=”#0e004a” body_font_size=”20px” body_line_height=”2em” background_layout=”dark” hover_enabled=”0″ header_font_size_tablet=”” header_font_size_phone=”20px” header_font_size_last_edited=”on|desktop” body_font_size_tablet=”18px” body_font_size_phone=”20px” body_font_size_last_edited=”on|desktop” image__hover_enabled=”on|hover” image__hover=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/Asset-46.png” title_text=”Asset 46″ sticky_enabled=”0″]<\/p>\n

We connect you with:<\/span><\/p>\n

    \n
  • 1:1 medical mentor<\/span><\/li>\n
  • Expert doctors<\/span><\/li>\n
  • Scientists and researchers<\/span><\/li>\n
  • Clinical trials<\/span><\/li>\n<\/ul>\n

    [\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.7.1″ background_enable_color=”off” custom_css_main_element_last_edited=”on|phone” custom_css_main_element_tablet=”width:33% !important;” custom_css_main_element_phone=”width:100% !important;”][et_pb_blurb title=”Emotional Support<\/span>” image=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/11\/Asset-48.png” alt=”HOH Emotional Medical Support Icon- rare disease clinical trial- help finding a doctor” icon_alignment=”left” content_max_width=”100%” image_last_edited=”off|desktop” _builder_version=”4.8.2″ header_level=”h3″ header_font=”Heebo|900|||||||” header_text_color=”#0e004a” header_font_size=”22px” header_line_height=”1.3em” body_text_color=”#0e004a” body_font_size=”20px” body_line_height=”2em” background_layout=”dark” hover_enabled=”0″ header_font_size_tablet=”” header_font_size_phone=”20px” header_font_size_last_edited=”on|desktop” body_font_size_tablet=”18px” body_font_size_phone=”20px” body_font_size_last_edited=”on|phone” locked=”off” image__hover_enabled=”on|hover” image__hover=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/11\/Asset-49.png” title_text=”Asset 49″ sticky_enabled=”0″]<\/p>\n

    We connect you with:\u00a0<\/span><\/p>\n

      \n
    • 1:1 support mentor<\/span><\/li>\n
    • Others with your disease<\/span><\/li>\n<\/ul>\n

      [\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.7.1″ background_enable_color=”off” custom_css_main_element_last_edited=”on|tablet” custom_css_main_element_tablet=”width:33% !important;” custom_css_main_element_phone=”width:100% !important;”][et_pb_blurb title=”Legislation<\/span>” image=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/Asset-39.png” alt=”HOH Legislation Support Icon- rare disease clinical trial- expert doctors” icon_alignment=”left” content_max_width=”100%” _builder_version=”4.8.2″ header_level=”h3″ header_font=”Heebo|900|||||||” header_text_color=”#0e004a” header_font_size=”22px” header_line_height=”1.3em” body_text_color=”#0e004a” body_font_size=”20px” body_line_height=”1.6em” background_layout=”dark” hover_enabled=”0″ header_font_size_tablet=”” header_font_size_phone=”20px” header_font_size_last_edited=”on|desktop” body_font_size_tablet=”18px” body_font_size_phone=”20px” body_font_size_last_edited=”on|desktop” locked=”off” image__hover_enabled=”on|hover” image__hover=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/Asset-43.png” title_text=”Asset 43″ sticky_enabled=”0″]<\/p>\n

      We help you secure support and funding from:<\/p>\n

        \n
      • Assemblymen<\/span><\/li>\n
      • State and federal legislators<\/span><\/li>\n<\/ul>\n

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        Having a rare condition is difficult enough.<\/h2>\n

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        You don’t need to navigate it on your own.<\/p>\n

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        Reach out, get help – it’s that simple.<\/span><\/h3>\n

        All you have to do is reach out.<\/p>\n

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        Having a rare condition is difficult enough.<\/h2>\n

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        Reach out, get help – it’s that simple.<\/span><\/h3>\n

        All you have to do is reach out.<\/p>\n

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        [et_pb_section fb_built=”1″ custom_padding_last_edited=”on|phone” admin_label=”Header” _builder_version=”4.7.1″ background_color_gradient_direction=”90deg” background_image=”https:\/\/hwofhope.org\/wp-content\/uploads\/2020\/10\/HOH-hero-image-about2-1.jpg” background_position=”bottom_center” min_height=”350px” min_height_tablet=”” min_height_phone=”auto” min_height_last_edited=”on|phone” custom_margin=”0px||0px||true|false” custom_padding=”4vw||4vw||true|false” custom_padding_tablet=”||||false|false” custom_padding_phone=”||||true|false” background_last_edited=”off|desktop” background_enable_image_tablet=”off” background_enable_image_phone=”off” background_position_tablet=”top_right” background_position_phone=”top_right” title_text_phone=”hero-background-mobile” title_text_tablet=”hero-background-tablet”][et_pb_row custom_padding_last_edited=”on|tablet” _builder_version=”4.7.1″ background_color=”rgba(255,255,255,0.74)” width_tablet=”90%” width_phone=”90%” width_last_edited=”on|phone” max_width=”1000px” custom_margin=”|auto||10%|false|false” custom_padding=”35px|35px|0px|35px|false|true” custom_padding_tablet=”50px|30px||30px|false|true” custom_padding_phone=”35px|20px||20px|false|true” module_alignment_tablet=”center” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” border_color_all=”#1b123d”][et_pb_column type=”4_4″ _builder_version=”4.4.7″ custom_padding_tablet=”|||30px|false|false” custom_padding_last_edited=”off|desktop”][et_pb_text content_tablet=” %22Why’d I start Highway of Hope? Simple \u2014 I’ve been there%22 ” […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":""},"yoast_head":"\nAbout Highway of Hope | Join a Rare Disease Clinical Trial<\/title>\n<meta name=\"description\" content=\"What makes Highway of Hope different from other rare disease organizations? 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