Wednesday, February 19, 2014

Igniting the flame...

A Sleeping Giant: 30 Million Living with Rare Disease. Rare Disease Day - February 28, 2014

Sometimes simple words can ignite a flame…

That’s the way I felt some time ago, when I was reading a piece from the National Organization for Rare Disorders (NORD). The words were: 

There are 30 million Americans living with a rare disease.

It’s a stunning number with extraordinary possibilities. 

When NORD encouraged the rare disease community to participate in this year’s Rare Disease Day on February 28, PHA decided to jump in. We asked Publications intern, Kristie Link, to design a Facebook/website banner around:

A Sleeping Giant: 30 Million Living with Rare Disease

Last week we launched it on PHA’s Facebook page. We then began asking our community to copy the banner onto their Facebook pages and/or websites. We asked our members to do this. We asked the pharmaceutical industry. And, we asked NORD (who we have worked with for many years) to make it available – with the same request – to the 200 rare disease organizations that are their members. Many of those we have asked are responding, including NORD, who will be circulating the banner and request this week.

PHA has never been an organization satisfied to howl at the moon. We know that posting a banner is not an end. It is just a beginning. We are hoping that a rapid and large response will demonstrate that the rare disease community is ready to be heard.

We believe that creating a better life for rare disease patients is no different than any other effort to change the political and social landscape. It requires a constituency… a large and well-organized constituency with shared and targeted goals.

Our limitation has always been our belief that we are rare. Thanks to NORD, we now know that we are 10 percent of the U.S. population. Our potential for positive change is unlimited.

The question now is whether we have the will and ability to find – and the strategic sense to successfully engage – The Sleeping Giant that is us.

We invite you to join us in taking the simple first step today. Copy the banner and post it on your Facebook page and/or website and ask family and friends to do the same.

Here’s how: 
  1. Go to 
  2. Right click on the banner 
  3. Choose “save picture as” or “save image as” 
  4. Save the banner on your computer 
  5. Post it to your Facebook cover, blog or website 

Thank you for jumping in and making Rare Disease Day a wake-up call and a doorway to new possibilities. 

Wednesday, February 5, 2014

Bringing ideas to reality ... for the good of us all

Here is a guest blog from Kim Lamon-Loperfido, PHA’s Patient & Caregiver Services Manager, who has recently taken on coordination of the Tom Lantos Innovation in Community Service Awards.  Since its launch five years ago, the program has held true to the goals of supporting good ideas that can make a difference to the PH community. The Lantos Grants help patients and family members bring those ideas to reality. They then become resources and models for the PH community as Best Practices for us all. About half the awards are made to U.S. applicants, while the others support ideas from our partners in other nations.

Bonnie Patricelli and son Ryan Juntti, a PH patient,
created "Hot Holders for Hope" with a 2012 Lantos grant.
These hot beverage cup sleeves spread PH awareness
and point people toward PHA for more information.
I’m excited to be managing the Tom Lantos Innovation in Community Service Awards program this spring, and I’d love to tell you more about it and how you can get involved. This program allows members of the PH community to fund and make their ideas for raising PH awareness a reality. Already I have had conversations with several community members who have experienced a spark of inspiration but aren’t quite sure how to turn that spark into a full project for their application. Through these conversations, we have explored the primary goal they are trying to work toward, and from there, we’ve filled in details on how they can reach that goal. It’s been so inspiring to hear what our community has been contemplating. And I’d love to hear from you, too!

This program is now in its fifth year of funding projects to advance the PH cause. This year the Lantos Awards program will provide as many as 10 grants of up to $5,000 each. Both domestic and international applications are welcome.

If you need ideas for projects or just want to see what others have done in the past, we’ve got lots to share. Take a look at some of the projects from the past four years:
  • Steve Van Wormer, a PHA Board member and PH parent, created a series of PSAs to help raise PH awareness. One on the importance of early diagnosis of PH has become so popular, it’s been translated into more than 30 languages to help more than 40 national PH associations build their own early diagnosis campaigns across the globe. View the PSAs
  • The PH association in Spain used its award to organize the first Seminar on Psychological Care for PH Patients, which reached out to psychologists and psychiatrists in Madrid. Learn more
  • Donna Caterini, a PH patient and support group leader in Pennsylvania, used her Lantos Award to create PH awareness posters depicting the story of the three little pigs. The wolf is a PH patient, huffing and puffing, and the little pigs appear carefree because they know the wolf can’t get them. View the poster 
From the pages of the award winners above, you’ll be able to link to all the 2010, 2011 and 2012 awardees to see the ideas that have been funded and stimulate your own thinking. These are just some of the ideas from the past, and those wishing to apply for funding should know that their projects can also replicate the efforts from previous Lantos Awards. For example, you can take a previous idea and introduce the project to a new audience or add a new component.

The grant program is named for the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH. The program is funded by Gilead.

For more information or for help with your application, please reach out to  I am so excited to work with you as you turn that spark of inspiration into a full-blown project to advance the PH cause. Although applications are due by April 15, 2014 – let’s chat today!