5 Ways to Take Action and Help Fight H-ABC

After learning about the children who suffer from H-ABC, chances are you want to do something to help. You want to make a difference in the lives of those affected by this debilitating condition. You want to have a real impact.

Rest assured that no act of kindness is too small in supporting our cause.

Anything you can do to spread awareness of H-ABC or raise funds for disease research brings us one step closer to finding a cure.

Therefore, we wanted to share with you a few ways to take action and help fight H-ABC…

These seemingly minor deeds can go a long way toward giving children with H-ABC a fighting chance, and all they require is your time! 

1) Share Resources with Friends, Family Members, Coworkers, and Others.

One of the biggest obstacles we need to overcome in this fight against H-ABC is a lack of awareness. Since H-ABC is a rare disease (i.e., one with fewer than 200,000 sufferers), many people don’t know about it.

That’s why educating others about H-ABC—even just its existence—is so important. As more and more people discover the impact this disease has on families throughout the world, interest and support are able to grow.

One of the ways to take action today is to share resources with friends, family members, coworkers, and others, making them aware of H-ABC and educating them about this disease.

How?

Here are a few ideas:

  • Send a link to our website via email, introducing others to our foundation.  

  • Share one of our blogs on social media.

  • Distribute our fact sheet to those who are interested in learning about the disease itself.

  • Direct people you know to our YouTube channel, so they can see the effects of H-ABC.

Although it may not seem like much, simply informing others about H-ABC is tremendously helpful in supporting the cause.

2) Ask for Donations in Lieu of Gifts.

Requesting donations in lieu of gifts is one of many great ways to take action and help fight H-ABC!

If you have a birthday, wedding, or other special event coming up, consider using it as an opportunity to raise funds for H-ABC research. Let friends and family members know that if they wish to mark the occasion with a gift, you’d love it if they would contribute to a cause you care about instead.

You could also make it easier for them by…

In addition to raising money for much-needed research into a cure, you’ll also be getting others involved. Plus, there’s no better gift than knowing you helped make a difference in the lives of families affected by H-ABC.

3) Use Our Hashtags on Various Social Media Platforms.

If you’re active on social media, you likely apply hashtags to the photos and posts you upload already. What you may not realize is that using hashtags on Facebook, Twitter, Instagram, and YouTube is just one of the many ways to take action and help fight H-ABC.

You see, applying hashtags is not only a fun activity but also a free, convenient, and effective way to spread awareness. Hashtags have the ability to go viral and often result in a lot of additional content. Further, they allow people from across the globe to unite around a shared cause.

By using our hashtags—#FightHABC and #SaveAChild—on photos, links, and posts, you can help spread awareness and grow our community of supporters!

4) Sign Up to Become a Peer Advocate.

If you’re eager to do more, you may want to think about signing up to become a peer advocate. In this role, you’d volunteer your time and fundraise with us!

One of the ways to take action and help fight H-ABC is to set up your own personal fundraising page and encourage others to donate. If you enjoy physical activity, create a pledge campaign and ask people to sponsor you in an obstacle course, marathon, backpacking excursion, etc. Let them know that their contributions will go toward research and help in giving children with H-ABC a fighting chance!

If you’d rather host an event to raise money for H-ABC research, you could…

  • Put together a bake sale

  • Do a car wash

  • Run a penny drive

  • Hold a raffle

  • Organize a potluck or dinner

Don’t be afraid to get creative!

5) Give While Doing Your Normal Shopping on Amazon.

Like many people, you may be under the impression that you can only donate to a cause directly. Fortunately, that’s not the case. In fact, you can assist in raising money for H-ABC research by just shopping on Amazon!

AmazonSmile makes it easy for you to support charitable organizations such as the Foundation to Fight H-ABC, and it doesn’t cost anything extra!   

Here’s how it works…

  1. Visit smile.amazon.com and log in as you would normally, you same Amazon login will work.

  2. Before you begin shopping, you’ll be asked to select a charitable organization. Simply search for Foundation to Fight H-ABC.

  3. Browse millions of products that are eligible for AmazonSmile donation. They’ll be marked accordingly.

  4. When you buy items that are eligible for AmazonSmile donation, 0.5% of your purchase will be given to the Foundation to Fight H-ABC.

That’s it!

If you’re a frequent Amazon shopper, opting to go through the AmazonSmile site is an effortless way to raise money for our cause. And every bit helps!

Takeaway

It’s a message that bears repeating: No act of kindness is too small in supporting our cause.

If you feel for those affected by H-ABC and want to make a difference in their lives, there are plenty of ways to take action today!

Help spread awareness by sharing resources with others or using our hashtags (#FightHABC and #SaveAChild) on social media. Assist in raising funds by asking for donations in lieu of gifts, becoming a peer advocate, or shopping on AmazonSmile.

However you choose to help, just know your efforts are appreciated! 

Foundation to Fight H-ABC Joins the National Organization for Rare Disorders

We have exciting news! This past January, the Foundation to Fight H-ABC joined the National Organization for Rare Disorders as a Platinum NORD member organization.

What Is the National Organization for Rare Disorders?

The National Organization for Rare Disorders (commonly referred to as NORD) is a nonprofit patient advocacy organization dedicated to those with rare diseases and the organizations that serve them. 

For more than 30 years, the organization has worked to raise awareness of various rare diseases, drive supportive policies, advance medical research, and provide resources to those who need them. 

NORD’s ultimate goal is to improve the lives of individuals and families affected by rare diseases. In addition to offering educational materials, patient assistance, research support, and advocacy, NORD provides mentorship for disease-specific patient organizations, such as the Foundation to Fight H-ABC.

What Are the Criteria for Becoming a Platinum NORD Member Organization?

To become a Platinum NORD member organization, a disease-specific patient organization must have the following:

  • A mission and programs that align with NORD’s goal of being patient-centered

  • Proof of tax-exempt status

  • Dated bylaws showing mission and programs align with NORD’s goal of being patient-centered

  • Bylaws detailing the process for board member elections, term limits, etc.

  • Programs that engage patients, caregivers, families, medical professionals, and supporters

  • An up-to-date website reflecting the mission and patient voices

  • At least 5 board members that meet at least twice annually

  • At least 3 medical and/or scientific advisors, as well as a policy and procedures for expectations and management of the advisory board

  • Thoroughly reviewed and accurate medical information

  • A conflict-of-interest policy for board members and staff

  • A board-approved annual operating budget

  • A privacy policy that protects patients’ and family members’ identities

  • A full disclosure of how donations are used

After the Foundation to Fight H-ABC was found to meet the above criteria, our organization was accepted as a Platinum NORD member organization.

What Does This Mean for the Foundation to Fight H-ABC?

As a Platinum NORD member organization, we’ll be able to receive guidance and support to grow our organization and spread awareness of H-ABC.

NORD_MembershipLogo_PLAT_2020_CMYK.JPG

With this new partnership, we’ll have the chance to network with peers, collaborate with NORD to advocate on behalf of those affected by H-ABC, receive access to breaking news related to the rare disease community, gain insight into the policy process, and promote our cause to NORD’s extensive network.

In short, joining NORD will help further our efforts in giving children with H-ABC a fighting chance.

Additionally, being a Platinum NORD member organization allows us to support Rare Disease Day (February 29) in an official capacity. To learn more about this event, click HERE .

The Foundation to Fight H-ABC is grateful to be a part of this organization, and we’re looking forward to the opportunities the partnership will provide. For additional information about the National Organization for Rare Disorders, please visit their website at www.rarediseases.org.

Rare Disease Day 2020: Raise Awareness & Improve Access to Treatment for Individuals with Rare Diseases

Rare Disease Day 2020 will take place on February 29th of this year, putting a spotlight on H-ABC and other conditions like it.  

For individuals in the rare disease community, this annual event is one of the most important days of the year. However, those of us at the Foundation to Fight H-ABC understand that it’s not on everyone’s calendar. 

That’s why we wanted to take this opportunity to explain what Rare Disease Day 2020 is about and how you can get involved!

What Is Rare Disease Day?

Rare Disease Day is an annual event dedicated to the following:

  • Raising awareness about rare diseases and those affected by them

  • Improving access to treatment for individuals with rare diseases

  • Advocating for medical representation for those with rare diseases

The event takes place on the last day of February. Rare Disease Day 2020 is scheduled for February 29.

The National Organization for Rare Disorders (NORD) is the official sponsor of the U.S. event. NORD’s sister organization, the European Organization for Rare Disorders (EURODIS), is also a sponsor and organizes the international campaign.   

Although individuals and organizations in the rare disease community seek to educate, inspire, and involve others every day of the year, Rare Disease Day is a time when we join forces.

By coming together, the voices of those affected by rare diseases ring louder!    

How Did It Start?

Rare Disease Day was first observed in Europe on February 29, 2008—a “rare” date that happens once every four years. EURODIS and its Council of National Alliances then established it as an official event. A year later, EURODIS asked its sister organization, NORD, to sponsor the event here in the United States.

As of 2019, more than 100 countries across the globe have started to participate. Rare Disease Day 2020 is expected to be bigger than ever!

Why Is It Important?

Rare Disease Day is important because it draws much-needed attention to rare diseases and those affected by them. Here in the United States, any disease with fewer than 200,000 sufferers is considered rare. In Europe, a disease is categorized as rare when it affects fewer than 1 in 2,000 people.

Most people don’t realize how prevalent or troubling such conditions truly are, which is why it’s worth taking a look at some of the facts...   

Fact #1: Rare diseases aren’t so “rare.”

  • So far, more than 7,000 rare diseases have been discovered.

  • In the United States, rare diseases affect 25-30 million Americans.

  • It’s estimated that 350 million people worldwide are affected by rare diseases.

Fact #2: Rare diseases have a particularly large impact on children. 

  • More than half of those Americans affected by rare diseases are children.

  • Approximately 30% of children with a rare disease don’t live to see their 5th birthday.

  • Roughly 70% of rare genetic disorders begin in childhood.

Fact #3: Rare diseases are often difficult to diagnose and treat.  

  • On average, patients with rare diseases visit more than seven doctors before receiving an accurate diagnosis.

  • Of the rare diseases that have been identified in the U.S., more than 90% don’t have an FDA-approved treatment—including H-ABC.

  • Genetic testing helps in identifying many rare diseases, but not all of them.

As each rare disease affects a “small” number of people, pharmaceutical companies don’t see the value in developing drugs and treatments. Moreover, failure to prioritize research into rare diseases has led to many conditions going largely ignored.

This isn’t right, and this is why Rare Disease Day was created.  

At the Foundation to Fight H-ABC, we strongly believe that just because a disease is rare doesn’t mean it deserves less attention or scrutiny—a belief that others in the rare disease community share and one that, hopefully, you agree with too!

How to Make an Impact on Rare Disease Day 2020

If you have a heart to help those affected by rare diseases such as H-ABC, there’s no better time to get involved than now. Here are a few ways you can make an impact on Rare Disease Day 2020…

1) Wear and/or display stripes.

Fight H-ABC Rare Disease Day.jpg

The zebra is the official symbol of rare diseases in the United States, as it represents the uniqueness of all rare diseases and every individual affected. The theme for Rare Disease Day 2020 in America is “Show Your Stripes,” which you can do by…

  • Wearing striped attire and encouraging others to do the same

  • Encouraging your workplace to do a large-scale stripe project

  • Featuring zebra stripes on your website in honor of rare diseases

2) Get the word out on social media.

One of the primary goals of Rare Disease Day is to spread awareness about rare diseases and those affected by them. Using social media to get the word out about H-ABC and other rare conditions is a great way to involve your friends and followers too!

Try…

  • Changing your profile photo to include stripes

  • Uploading a photo of yourself wearing stripes and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

  • Writing a post about the need for support and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

  • Creating a short video about your desire to help those with H-ABC and adding the hashtags #ShowYourStripes, #rarediseases, #RareDiseaseDay, #FightHABC, and #SaveAChild

3) Share information about rare diseases such as H-ABC.

Educating others about rare diseases such as H-ABC is crucial; otherwise, these conditions go unnoticed. Consider sharing one of our articles on social media, sending a link to our website via email to friends and family members, or distributing our fact sheet to those you know. 

4) Volunteer as a peer advocate.

Simply volunteering your time as an advocate to raise awareness of rare diseases can make a huge difference. The more attention a condition receives, the greater the likelihood of funding research for a cure.

For instance, you can create a personal fundraising page or host an event for H-ABC.

5) Donate any amount you can.

By giving any amount to the Foundation to Fight H-ABC, you can help fuel research efforts and give children with H-ABC a fighting chance!

Additionally, you can donate to NORD and assist them in providing resources to those in the rare disease community.

Takeaway

With Rare Disease Day 2020 right around the corner, now is a great time to show your support for those affected by H-ABC and other rare diseases. 

Remember that just because a disease is rare doesn’t mean it deserves less attention or scrutiny. To donate or volunteer as a peer advocate for the Foundation to Fight H-ABC, click HERE.

CRISPR Research

We are very happy to announce that CRISPR expert at Harvard/MIT, Professor David Liu will be working with the research team at CHOP. Professor Liu’s work is highly prominent in the field having pioneered the use of engineered CRISPR Cas variants with improved specificity and targeting ability. The advantage of this approach is that bringing a truly cutting-edge technology to treat H-ABC.

HOME  |   ABOUT   |  RESOURCES   |   CONTACT   |   PRIVACY POLICY