Learning to balance privacy and the call of advocacy

As with anything, it turns out there is learning curve to using my personal blog as a platform for advocacy. It is a challenge that I am having to deal with the more lately, as the date for my son’s next surgery looms near.

This will be the first major hospitalization since I started chronicling his medical journey for the internets.  To me it’s a biggie, a jaw distraction.

My dilemma:

Do I blog our ENTIRE experience?

Do I upload potentially graphic pictures?

Do I owe my son his privacy or do I owe my readers a REAL glimpse into our lives?

I still haven’t decided.

As a mom, I struggle with questions How much information is too much information? and  Am I violating my son’s privacy?

But as a writer, I am constantly reminded that I don’t do it for myself, I write to help other families. When I think about how much sharing our story, be it through words or pictures, can help other parents and children I feel I am doing the right thing, for us.

Obviously it may not be the right thing for other families. But there is a strong urge to continue living our lives as transparently as possible. Only then will others truly realize what we go through — the good and the bad.

When all is said and done, I just need to find the fine line between his personal privacy and the call I hear to advocate for him and with him. Can I have one without the other? I think so. Surely I can find a way to advocate without plastering his surgical recovery pictures all over the internets.

How do you maintain your privacy when places like Facebook and Twitter are made to keep interested parties updated on your every move?

Photo: Aaron Kohr

Children’s Rare Disease Network Partners With Medpedia.com To Create Rarespace

Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community

Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is an online knowledge sharing platform designed in partnership with R.A.R.E. Project, the Children’s Rare Disease Network and Medpedia.com to help grow resources for children with special needs. This resource is available online now at RareSpace.

“RareSpace is a unique and valuable tool for families caring for children with rare diseases,” says Jonathan Jacoby, CEO of the R.A.R.E Project. “With the help of Medpedia.com, RareSpace will become a safe place to share important information aggregated from the rare disease community at large, which is vital to finding hope for children.”

It’s the collaborative structure of RareSpace that makes it truly unique. The site will educate and connect users about critical resources, innovations in research, standards of care as well as best practices in treating rare diseases and disorders. Creating a community filled with medical professionals, policy advocates, researchers and parents catalyzes a free exchange of information, increasing the general knowledge quotient of every stakeholder. The goal is to supply real resources and connections for those who are in the care of children living with rare diseases and disorders, and help each family not feel isolated in their struggles to care, treat and advocate for these sick children.

“It’s so critical for families and caregivers to have a knowledge bank like RareSpace to draw from,” says Devon Watts, community manager at Medpedia.com. “We are excited that Medpedia.com is a part of connecting a community and granting an open space for dialogue and education. It’s the widespread sharing of information that will benefit patients most.”

Different from other community sites, one key advantage of RareSpace is that people can share documents and resources very easily. Discussions of genetics and genetic diseases in general happen on RareSpace, with the understanding that research on all these diseases could lead to cures for other genetic disorders as well. Articles on translational research and discussions of possible cures for diseases can be found on RareSpace. A major benefit is that medical professionals will answer questions posed by site users about treatment, best practices and how to best help these children and their families. Users will create profiles and have the opportunity to upload documents and links and connect with other users all within the RareSpace portal. In addition to connecting within RareSpace, users will have the ability to create disease specific groups that can all be linked with RareSpace. This robust platform provides numerous ways to share critical information and knowledge across the rare disease community, which can be done in a safe environment that includes representation from all of the key stakeholders involved in rare disease.

“How To” – A Jean Ribbon for Global Rare Disease Day

New York Times Reports on Cystic Fibrosis Advancements

For everyone planning to attend Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data, NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010 : Must read this fascinating article in the New York Times this week on cystic fibrosis, article here.  Also, don’t forget to check out the Boot Camp offered by Genetic Alliance, link here.

:: Catherine Calhoun

Rare Disease Research Conference at NIH in Jan. 2010, registration is close to full, act fast.

Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data.

NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010.  Over 200 people are registered and registration will close at 250 people.

:: Catherine Calhoun

Save the Date! Conferences of interest to parent advocates!

Here are some upcoming conferences that parent advocates and advocacy groups might be interested in:

Gov 2.0 Expo in Washington, DC on September 8, 2009.

The FEAST Conference in New York City, NY on October 1, 2009.

American Academy of Pediatrics in Washington, DC on October 17 – 20, 2009.

Bone and Joint Decade Global Network Conference in Washington, DC on October 21 – 24, 2009.

Burrill Personalized Medicine Meeting, San Francisco Nov 10 – 11, 2009.  http://www.burrillandco.com/personalized_medicine_2008/

Partnering for Cures in New York City, NY on December 1 – 3, 2009.

TED2010 in Long Beach, CA on February 9 – 13, 2010.

National Summit on Disability Policy in Washington, DC on July 25 – 27, 2010.

No time or money for travel, see PALS for informative monthly webinars and Personal Democracy Forum for amazing teleconferences/podcasts.

Catherine Calhoun

Bill Cassidy R-LA shows interest in supporting rare disease

Last week my family talked one-on-one with our representative (Bill Cassidy R-LA). We met up with his assistant as we walked in, and he got us situated in a quiet corner of our local town hall. We watched as people streamed in for Dr. Cassidy’s “Town Hall” meeting, standing room only. I was a little nervous but excited too. After a few minutes, Dr. Cassidy came over to meet with us.

After all around introductions, he asked what he could do to help. I explained my son’s health condition, McCune-Albright syndrome (MAS/FD), and how its rarity makes care particularly challenging. We have no “best practices” or consensus among doctors on how best to treat his bone disease (fibrous dysplasia). Billy’s pain medicine is an “off-label” use. His titanium rods, one in each femur, are “off-label” – no one can gather scientifically valid information from his care because his condition and care change so rapidly (pharmaceutical companies cannot promote off-label use of his pain medication, etc.). I said things like “misinformed care happens all the time in the United States and world and actually hurts kids – worsening their bone disease for life. Anything Congress can do for bone health, specifically rare bone diseases, would be fantastic.”

Dr. Cassidy did not miss a beat. He seemed to “get” what I was saying which is really saying something because MAS/FD is a complicated multi-system beast, even for a hepatology/gastroenterology medical fellow like Dr. Cassidy. He was deferential to our expertise. He was strong in his appreciation for the overall situation and our passion to not just help Billy – we want to improve medical care for everyone. Honestly, it was better than I expected.

This week thank you notes have been sent. And I am hoping that this is just the beginning. I hope to schedule a call with Dr. Cassidy and a few other fibrous dysplasia folks soon. Also, I am penciling Dr. Cassidy in for (1) future bone health initiatives and (2) my February 2010 “Care about RARE” party.

I prepped for our meeting with a great web/teleconference hosted by the Patient Advocacy Leaders Summit (PALS). While the conference topic was specifically on healthcare reform, I found several of the advocacy tips offered by Ron Christie of Christie Strategies helpful for my introductory meeting with Dr. Cassidy. His tips include (1) knowledge is power, (2) don’t be shy, (3) contact your congressional leaders locally and in Washington D.C., (4) reach out as part of a larger patient group, and (5) write letters to your local newspapers because your leaders read these papers to see what issues are important to constituents. Mr. Christie referenced Roll Call, Politico, and The Hill as great sources for up to date information on politics.

Another presentation that I found helpful can be found at Resource Repository. Parent advocate, Melissa Perez, shares an amazing story on a budget crisis that threatened regional genetic centers in Florida and offers lots of insight into the advocacy process. Because I am a big nerd and take notes whenever I watch things like this, I am adding “don’t assume someone else will do it” and “remember why you’re doing the advocacy” to my bulletin board notes posted for everyone to see – well, everyone in my kitchen.  Thank you Melissa!

Catherine Calhoun

Nominate Your Rock Star of Science!

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative!
Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a philanthropic campaign pairing A-list rock stars and celebrities with the country’s leading Medical Researchers to:
• bridge the recognition gap that makes Britney Spears more influential than Stephen Hawking
• celebrate America’s most important Scientists
• heighten public awareness of the dire need for additional funding for scientific research
• gain recognition for the breadth of Geoffrey Beene causes
• collect signatures in support of a trip to Capitol Hill on September 24th to meet with House and Senate leadership to further these goals
We are asking you to do two things – Please sign the Rock S.O.S Declaration (hyperlink to: http://www.rockstarsofscience.org/declaration.asp), a simple way to show our community support and Nominate Your Rock Stars (hyperlink to: http://www.rockstarsofscience.org/nominate.asp) today! Let’s do it!!!

Survey says: Misdiagnosis of rare diseases is common

No doubt many of you reading the above thought, “Well, I could have told you that!” Here’s a statistic: The  of 5,980 people about the delay in diagnosis for 8 rare diseases in Europe, published in 2004, found that 40% of individuals were initially misdiagnosed. For many of the survey respondents, misdiagnosis led to inappropriate medical interventions including surgery, medicines, and psychological treatment. In addition to the delay in diagnosis:

• 25% of people reported waiting between 5 and 30 years from the time of first symptoms to a confirmatory diagnosis of their disease
• 25% of people had to travel to a different region to obtain a diagnosis and 2% had to travel to a different country
• In 33% of cases, the diagnosis was announced in unsatisfactory terms or conditions. In 12.5% of cases, it was announced in unacceptable ones
• The genetic nature of the disease was not communicated to the patient or family in 25% of cases (despite most rare diseases having a genetic component)
• Genetic counseling was only provided in 50% of cases

The reason I’m bringing this survey to your attention now is for two reasons. One is that it provides some good statistics for you to quote when talking about rare diseases. The second is that the survey results, and those of the third EurordisCare survey, have been published in a book form, which I’ll discuss in another blog.

• EurordisCare2 Survey information and explanation
• Why Is Getting a Rare Disease Diagnosis So Difficult?
• The Undiagnosed Diseases Program at the National Institutes of Health

Mary Kugler, RN

BLOG Redesign

Stay tuned. You will soon see a redesign of The Project Charity Blog. We will be working with various talented individuals that will be writing for us – helping build a community of families with experiences to share. We are looking forward to moving our mission forward, building a platform for communication, collaboration and outreach that will help those facing challenges related to rare disease.

Please join us, share this with your friends and visit often.

Nicole