Learning to balance privacy and the call of advocacy
July 11, 2010 by Janis Marie
Filed under Family Life, Featured
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
R.A.R.E. Project’s, Jonathan Jacoby to present at FDA Hearing on Rare Disease
June 29, 2010 by admin
Filed under Advocacy/Policy, Bench to Bedside, News
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases.
This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects of the development of medical products for the diagnosis, treatment, or management of rare diseases. The input from this public hearing will help inform the work of FDA’s committee for rare diseases
Jonathan Jacoby, CEO R.A.R.E Project will present case studies on therapeutic candidate generation, focusing on;
- Challenges of patient-driven R&D
- Challenges and successes with biomarker identification
- Experience with Orphan Drug Designations
- Individual investigator INDs and IND exemptions
- NIH clinical trials
- Barriers to recruitment and participation in CTs
Following the presentation, Jacoby will provide recommendations that include the importance of very small CTs as a pathway to regulatory approval. Jacoby will present this testimony from 11:40 – 12:00, June 29, 2010.
The meeting will be webcasted and any interested persons are encouraged to join:
- Dates: June 29-30, 2010
- Time: 9:00 AM to 5:00 PM ET
- Webcast addresses (will be active at the time of webcast):
June 29 – collaboration.fda.gov
June 30 – collaboration.fda.gov
Parent Essay: It All Happens in the Grocery Store.
February 23, 2010 by KellyS
Filed under Family Life, Featured
When you have a special needs child, (or in our case, special needs children) often times you get messages from the “Universe”. Life is so chaotic and crazy that you just can’t be bothered to stop and listen to people anymore! You can’t handle the things that regular people have to say, so you just listen for the Universe to speak to you. It’s hard to find people with whom you have things in common anymore. In our case, our oldest son was born with a very rare genetic syndrome, Joubert’s Syndrome. When he was 6, we adopted two brothers, one was born addicted to Meth, and the other was a very unattached child moved to 6 different homes before the age of 2! So as you can imagine, it has always felt like we could identify with the mysterious voice of the Universe more than regular people. You think to yourself, “No one understands what my family is going through, so I’ll just put up the “Cone of Silence” and move on.” Somehow, the voice of the Universe still gets through the blinders and earmuffs you’re wearing, and you begin to get messages to help you move through the day. If I really be patient and quiet, I usually get the guidance, insight and offbeat humor that I desperately need!!! The best message I ever received was just a few months ago and laced with raw humor!
I had dared to take my 3 boys to the grocery store once again….that’s the definition of insanity! Remember the old story of walking down the same street and falling in the same hole over and over again as being the definition of insanity? Walking in a grocery store over and over again with my 3 boys is insanity! So against my better judgment, yet with a need for food; I decided to take all 3 boys in. I gave the boys stern warnings about not running off, not hanging off the cart, and not touching things. I dared to presume we would have a successful visit because I buckled David (aka/Evel Knievel) into the cart. I knew I was safe as long as he was in maximum security “lock down”. Off we proceeded into the wild green grocery yonder. I stopped to talk to the Pharmacist for literally 30 seconds and turned back around to discover David was out of the cart and running down the aisle!!! I burned holes in him with my laser red eyes as I yelled out his name! I felt like the Terminator! “Get back over here David!” He marched back with head hung low, sad that his whole plan to rule the candy aisle had been foiled!! Poor kid, but happy me because I averted a crisis!! Thank Goodness! We arrived back home safely and everyone was in one piece; I however, was once again wearing a sweaty, pitted-out shirt from the stress of the usual grocery store torture! Ugh!! I had each boy take a grocery bag inside the house, and as they marched with their bags like little soldiers, I noticed something unfamiliar through one of the bags. I started to feel hot and prickly as I wondered if we inadvertently stole something. I peered around my corner to see if the Grocery Security Police had followed me home. We quickly got inside the house and I opened the bag. I was stunned when I saw the unfamiliar stow away! It wasn’t toys, it wasn’t candy….wait for it….it was STRESS B COMPLEX VITAMINS!!!!!! This is a TRUE STORY!!! STRESS B COMPLEX VITAMINS!!!!! I quickly snatched my receipt out of my purse to see that yes, I had actually bought them too and didn’t even realize it!!! I have always felt that the stress of the grocery store is like an out-of-body experience…now I have proof!! In the few seconds that David slipped out of the cart, he had “5-fingered” the bottle of vitamins and slam dunked them in the basket with skill that would make Michael Jordan proud! I can only imagine the look he must of given the checker (though I’m thinking now, she must of thought to herself when she saw the vitamins ,”so that’s how she manages these 3 crazy animals!”) a look of,”Pleeeassse don’t ask if these are ours…my MOM NEEDS THESE…RUN THEM THROUGH NO QUESTIONS ASKED!” So out of all things my child could have slipped in the cart.… STRESS VITAMINS FOR MOMMY! If you don’t think that’s some divine message from the Universe, you are not alive!
So my point is that I have tried to explain our situation to people over the years and they sometimes “glaze over” in confusion and disbelief, especially when I try to explain Derek’s rare syndrome! So you just have to be patient and soon enough, you’ll get back to regular relationships and communication with other typical parents again. After a while, you learn not to take things so seriously and sometimes you can actually muster up some humor about the whole situation. But until you do, you might as well just talk to yourself and let the Universe answer back! Me and the Universe have a pretty good relationship now! I think we understand each other….I don’t ask the impossible anymore (ie: “Why me?”) and the Universe tries to entertain me!
By Kelly Seymour
Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for World Rare Disease Day 2010 (Feb. 28). #blog4rare
February 21, 2010 by Catherine Calhoun
Filed under Featured, Global Community
Welcome to the first official “Blog for Rare.” We’re bringing people from across the world together this week in celebration of World Rare Disease Day 2010 (February 28).
This SNiPs post is a mix of web links to specific blog posts and to bloggers who have a connection to rare disease (a blog roll of sorts). The links are in no particular order (and if I’ve left anyone out, please let me know so I can add you to the mix). Please spread the word – on the web, Facebook, and Twitter (#blog4rare, #raredisease), etc.
Small Portion of Life’s Journey
Dr. Val’s Blog (Better Health)
Moments in the Undiagnosed World
Rare Disease Blogs (Eurordis & NORD)
Claire Bidwell Smith at Mamapedia
You’re invited (Facebook event, here):
By Silvia Jané:
On the 28th of February is the World Day of Rare Diseases. I propose to make a picture of the moon and hang it (there will be a full moon) in solidarity with all people with rare diseases that share the same moon that the other inhabitants of the earth. Don’t forget the name of the place from you have took the pic!
Up Next:
Happy Birthday Genome! (And here.)
A huge thanks to all of our participants and to Lauren L. for the dog drawing (I love it).
If you have any thoughts good or bad about this blog campaign – or ideas for a next time, please post a comment here or email me at hellocatcal AT gmail DOT com. Or let any of the Children’s Rare Disease Network/Global Genes Project folks know.
Until next time,
Catherine Calhoun
Volunteer/Parent
Students Prepare for World Rare Disease Day with Blue Jeans Denim Ribbons.
February 16, 2010 by Catherine Calhoun
Filed under Featured, Global Community, Global Genes Project, Kids Helping Kids, News
Check out this article on students getting a jump on World Rare Disease Day — see news article here.
Photo by Travis Spradling of the Advocate, Baton Rouge, LA
“How To” – A Jean Ribbon for Global Rare Disease Day
January 4, 2010 by Catherine Calhoun
Filed under Featured, Global Genes Project
Rare finds and reminders this week from a parent advocate.
November 10, 2009 by Catherine Calhoun
Filed under Featured
Clearing my inbox, several worthwhile finds this week, including:
(1) From Genetic Engineering and Biotechnology News, an article by Taralyn Tan reminding everyone of the importance and value in funding the little guys of research, the little guys of rare disease. See blog post here.
(2) Just when I was about to scratch “gene therapy” off the coming soon list for my son’s disease, the New York Times covered recent small successes in gene therapy. See article here.
(3) Don’t keep your thoughts on health to yourself, comments for Healthy People 2020 are open until the end of December 2009. Speak up, soon, link here.
(4) How do you get your health information? Let NIH know. Individuals and organizations are encouraged to participate in this information share, this RFI closes at the end of December 2009. Again, speak up soon, link here.
(5) From Genetic Alliance, Ad Hoc Group for Medical Research: A letter thanking the administration for the NIH funds in the American Recovery and Reinvestment Act (urges NIH be a significant priority in the FY 2011 budget). To sign on to the letter, please contact Hayzell Gollopp at hgollopp@aamc.org by NOON on Friday, Nov. 20. Please circulate this letter to other organizations that may be interested in signing.
[Text of the Letter]
November XX, 2009
The President
The White House
Washington, DC 20500
Dear Mr. President:
The undersigned XXX patient groups, scientific and medical societies, research institutions, and industry organizations sincerely thank you for your commitment to “restore science to its rightful place” and for the historic short-term support for the National Institutes of Health (NIH) demonstrated through the American Recovery and Reinvestment Act (ARRA). Our organizations strongly supported that bill because, as you and your administration consistently champion, the future of this nation’s health and economy depends on bold, sustained investment in research.
We write today to urge you to maintain the remarkable scientific and economic momentum ARRA is generating by making NIH a continued high priority in Fiscal Year 2011. We ask you to make permanent NIH’s promising new capacity, avoiding a steep drop-off in its scientific potential and its proven ability to serve as job generator and key component of the R&D platform for the nation’s biomedical and high-tech economies. Robust, sustained funding will ensure NIH-supported scientists can aggressively pursue solutions to the most challenging threats to our health. From cancer to Alzheimer’s disease, autism to heart disease, depression to diabetes, HIV/AIDS to blindness, hope for millions of Americans depends on progress made through research, and promising, high-quality ARRA-funded research is now underway on these health conditions, as well as many more. The knowledge generated by research is also fundamental to transforming U.S. health care from a “sick-care” system to a system focused on preventing disease and promoting wellness. Indeed, we can say unequivocally that historic strong medical research investments have created the proven pathway to improved health, better quality of life, and expanded earnings potential for millions of Americans. Faster progress on preventing, delaying and treating illness is more important than ever as Americans age and become more diverse.
Finally, when NIH invests in discovery, it spurs economic growth. NIH Director Francis Collins recently stated that ARRA grants will create or retain 50,000 jobs in communities nationwide over the two-year period. This is in addition to the impact on supporting businesses that thrive when the biomedical sector grows. Moreover, NIH dollars promote global economic competitiveness – they serve as a powerful catalyst for additional public and private research investment and jobs, and this nation’s commitment to basic science has made America the world leader in medical and scientific discovery. Finally, local and state economies nationwide benefit from NIH investments. Eighty-five percent of the NIH budget is invested in U.S. communities through universities, medical schools, hospitals, research institutes, and innovative small businesses in every state.
The large and diverse research and patient communities, representing millions of individuals, stand united in support of strong NIH funding in FY 2011. With continued gratitude and support, we ask you to invest in NIH, thereby ensuring America capitalizes on the historic opportunity generated by ARRA. NIH funded research gives patients hope, and directly serves the long-term health and economic needs of the nation.
Sincerely,
[undersigned organizations]
:: Please make your voice heard. Regards, Catherine Calhoun.
Save the Date! Conferences of interest to parent advocates!
September 8, 2009 by Catherine Calhoun
Filed under News
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
Nominate Your Rock Star of Science!
September 3, 2009 by nboice
Filed under Bench to Bedside, Featured
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!!!
Searching for a Cure – Patient Perspective Podcast #1
July 13, 2009 by nboice
Filed under Bench to Bedside, Family Life, Featured
In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by the disease typically leaves these children wheelchair-bound by age 10 and robs them of their lives by 20. As she and her husband explored treatment options and ways they could become to raise money for research, they found that existing organizations were often focused on palliative care and focused on academic research rather than working with industry. Miller and her husband launched Cure Duchenne to help fund promising research at biotech companies in the hopes of seeing these therapies developed and commercialized. We spoke to Miller about her son’s story, new approaches to treating Duchenne, and the problems of funding cutting-edge research.
http://www.theprojectcharity.org/news/images/podcasts/CUT_SPM_BRP-7-13-09.mp3
