Rare on the Road 2017 Attended by cureCADASIL Trustee


Category Archives:CADASIL Advocacy

Rare on the Road 2017 Attended by cureCADASIL Trustee


Nancy Maurer, cureCADASIL President and Trustee, attended RARE on the Road in Kansas City on June 5, 2017. This event, sponsored by EveryLife Foundation and Global Genes, focused on topics from Capacity Building to the Patients’ Role in Drug Development, including breakout sessions and hands-on workshops. Attending this event enabled cureCADASIL to engage with other rare advocates and benefit from connecting with other disease advocacy leaders. Meeting and collaborating with leaders of other Rare Disease organizations was both encouraging and inspiring. The leadership teams of Global Genes and EveryLife Foundation brought such a refreshing perspective. Their energy and dedication to the Rare Disease cause is amazing and knowledge of the resources available so helpful. There was so much value in hearing speakers like Scott Hawley, a Stowers Institute Investigator and American Cancer Society Research Professor, talk about the importance of funding fundamental research for rare diseases and Lisa Schill discuss in detail how patient advocates can work with Congress to make a difference. The rare disease community is filled with wonderful leaders interested in collaborating to assist others on the journey with rare disease.

RARE on the Road succeeded in helping cureCADASIL leadership learn, grow and develop even more as activists for the CADASIL rare disease community!

2017 Rare Disease Week in DC with RDLA


Feb.27 – March 2, 2017

Over 600 Rare Disease patients, caregivers, researchers and advocates met in Washington during the course of the week. 350 advocates attended the Legislative Conference that was held on Tuesday, Feburary 28th. Through out the day experts from Capitol Hill and the patient advocacy organizations discussed what to expect from the new Administration and Congress for the coming year. 328 Rare Disease Advocates participated in a total of 270 Lobby Day Meetings where Representatives were asked to join the Rare Disease Caucus as well as discussing issues involving Health Care Reform and incentives for rare disease drug development.

Janice Ragazzo, Trustee from the cureCADASIL Association attended these meetings. Over the course of 3 days, Janice had arranged meetings with many N.Y Representatives, Senator Charles Schumer and Senator Kirsten Gellibrand’s office to discuss the important topic of petitioning the CDC to have an ICD-10 code assigned for CADASIL. She also delivered patients stories that she received from the CADASIL support group to each of their state district representatives and spoke to their health legislative aides.

Janice also attended the day long seminar provided by the RDLA to enrich and update the Rare Disease Advocates on many topics that have an effect of Rare Disease patients. Some of the subjects discussed: New Funding for the NIH, Health Care Reform, Rare Disease Funding Issues.  Top Health Policy issues were also discussed such as the Orphan Product Extensions Now, Accelerating Cures and Treatments(OPEN ACT), Rebuilding and Expanding the Rare Disease Congressional Caucus, Newborn Screening and Understanding the Clinical Drug

During breakout sessions Janice was able to learn how to become a more effective advocate on Capitol Hill. Through her follow ups with those she encountered she was able to get Congressional Letters of support to request that CADASIL receive an ICD code sent to the CDC from the offices of Representative Sean Patrick Maloney 18th District N.Y. and Representative Paul Tonko District 20. Also, after meetings with Emil Kakkis, President and Founder of the Everylife Foundation, Julie Jenkins Executive Director and Max Bronstein, Chief Advocacy and Science Policy Officer a personal letter of support was sent to the CDC Maintenance Committee on cureCADASIL’s behalf.

Janice with Emil Kakkis – President EVERYLIFE FOUNDATION

NC Rare Disease Coalition includes cureCADASIL Associate Trustee


cureCADASIL Associate Trustee Sandra Talbird joined the newly formed NC Rare Disease Coalition last Fall. The Coalition is made up of rare disease patient advocates representing a variety of rare diseases, with CADASIL being the only adult-onset disease currently represented. The Coalition’s mission is to advance the interests of the State’s rare disease community by advising the NC Advisory Council on Rare Disease (a legislative body made up of appointed members).

Sandra participated on behalf of cureCADASIL and the NC Rare Disease Coalition in a Legislative Event on June 7, 2016 to thank the NC legislators for passing House Bill 823, which created the NC Advisory Council on Rare Disease last August (2015). North Carolina is the first state to pass a law creating an Advisory Council on rare disease, although other states including New Jersey and Utah have similar statewide advocacy groups. The June 7th event was successful in terms of making connections with other rare disease organizations, the local media, and potential research collaborators, including the UNC Gene Therapy Center.

You can get additional information about NC Rare initiatives on their webpage by clicking here.

Christi Lushbaugh and Sandra Talbird attend the North Carolina Rare Disease Day event in February 2016.

cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill


cureCADASIL Trustee and tireless volunteer Janice Ragazzo attended Rare Disease Week on Capitol Hill 2016 events hosted by RDLA in Washington, DC to spread awareness of CADASIL to our members of Congress. During this exciting week, rare disease community members from across the country learned about federal legislative issues, met other advocates, and shared their unique stories with legislators. In addition, this year Janice delivered letters written by various CADASIL patients to their state’s representatives. Everywhere she goes, Janice displays the cureCADASIL logo in photos.  Janice is also working with NY Representative Maloney’s office to promote CADASIL being added to the medical diagnosis ICD-10 code.  Thank you Janice!  Below is a photo of Janice in action (look for the woman holding a CADASIL sign to the right by the wall!) and a video highlighting this wonderful event.

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How can I support cureCADASIL Association’s Mission?


Looking for ideas on how to help raise money for cureCADASIL Association toward our goals and mission? Here are some suggestions. We welcome yours, so please share them with us by emailing us at: info@curecadasil.org

Gifts: Looking for the perfect gift for someone on your list? Making a donation to cureCADASIL Association in honor of someone touched by this disease is a loving gesture.

GoodSearch.com: Join GoodSearch to raise funds for cureCADASIL Association! GoodSearch donates money to your favorite cause when you search the Internet, shop online or dine out at local restaurants! Use GoodSearch.com to search the Internet and they donate a penny per search to your cause. Use GoodShop.com when you shop online and they donate a percentage of every purchase and offer over 100,000 coupons to help you save money too! Sign up for their GoodDining program and they’ll donate a percentage of your restaurant bill when you eat at any one of thousands of participating restaurants. It’s really easy; it’s FREE, and turns simple everyday actions into a way to make the world a better place. Please sign up today to help support cureCADASIL Association! Go to www.goodsearch.com/nonprofit/cadasil-association.aspx to get started.

Make Change for Charity: Toss that spare change from your pocket or purse into a container. Once every few months, locate a Coinstar machine at your local grocery or discount store and donate the cash you receive back to cureCADASIL Association. This would also work well in a school setting.

One Thing I can Do: Your days are busy, and if you have CADASIL, sometimes filled with painful symptoms. Instead of thinking of all the many ways you can help make a difference, pick just one and follow through on it. One person doing one thing can help toward awareness and ultimately funding toward a cure.

Know someone who owns a business? Make a call today and ask if the business could host an event to benefit cureCADASIL Association. Many businesses in our communities are willing to partner with a good cause. One example: An ice cream shop allowed a charity to display their sign next to a receipt fishbowl by the cash register for one day. Patrons “donated” their receipt. The charity was given 5% of total receipts for the day! A restaurant in your area may be happy to do this with you!

Another example: A friend who sells products through home parties donated a percentage of sales at a party organized by a member of the charity. Make that call today!

Garage sale: After the holiday season, clean out those closets and pick a date for a spring or summer garage sale! Enlist friends and neighbors who may want to help, and have fun together while supporting cureCADASIL Association.

Electronic donations are always welcome and greatly appreciated at: www.curecadasil.org/donate

This information was initially featured in the May 2013 issue of EMBRACE newsletter published by cureCADASIL Association.  Thank you to everyone who has taken action to support the Mission of cureCADASIL Association! 

2013 Rare Disease Day CADASIL Association


2013 Rare Disease Day summaries from CADASIL Association leadership

From Anne McGuinness, President of CADASIL Association

Going to Washington, D.C. to be a patient advocate for CADASIL and other rare diseases was truly an empowering experience. Being on Capitol Hill makes you feel that you are really making a difference. Last year, Barbara Hunt and I attended the first RDLA Lobby Day, and we were among about 70 rare disease advocates. This year, we were among 200 advocates. To see how this movement has grown in just one year is very exciting. This year the CADASIL Association had four advocates from four states. We doubled our presence. Next year, I hope we can have even more CADASIL advocates attend. I would like to see a CADASIL advocate from every state. I was very proud to be from New Jersey. I think we had the largest group of advocates, so we had to be split into two groups. We represented about ten rare diseases. Our group included the Pediatric Hydrocephalus Foundation, Sarcoma Foundation of America, EDSers United (Ehlers-Danlos Syndrome), and the CADASIL Association. We all learned about each other’s diseases and exchanged ideas about furthering our common cause to find a cure for our disease. Organizations that represent rare diseases share many of the same concerns. It was a great opportunity to tell others about CADASIL. Because we all are in the same boat, the people you meet really understand the challenges we face. CADASIL Association was one of about 50 organizations represented. The RDLA took out a full-page ad in the DC newspapers “Roll Call” and “Politico.” An overwhelming sense of accomplishment came over me when I opened up the newspaper and saw the CADASIL Association listed. The CADASIL Association has been working very hard to increase public awareness of CADASIL. It seems like we are taking baby steps with this endeavor, but little by little the word is getting out. Rare Disease Day at the NIH afforded us the opportunity to make connections with likeminded organizations and industry leaders. Our table and bulletin board attracted many attendees. Researchers are looking for grants from patient organizations and we received many requests. Unfortunately, we don’t have the funds to offer grants at this time. We need to have fundraisers so we will be able to do so in the future. Maybe next year we will have grant money available. We collaborated with other organizations and gained insight on how to grow the CADASIL Association.

From Barbara Hunt, Treasurer of CADASIL Association

It was a great experience to participate in Rare Disease Week in DC for the second time. Last year went so smoothly it was hard to believe it could be done any better. However, the RDLA did make some changes for Lobby Day and they were welcomed improvements of the process. This year there were twice as many advocates as there was last year. Many of those I met last year returned. It was good to see old friends and share stories of the progress we have all made in the areas of awareness, fundraising, and research. The most gratifying part of the week was seeing an increase in awareness about CADASIL. Last year every time we said the word CADASIL, the response was: “What is that?” This year I heard several times: “Oh, I have heard of that.” What a great feeling to have someone who does not have CADASIL recognize it! This tells me that all of the advocating and raising awareness that you all have done is beginning to emerge. We can continue raising awareness by asking our members of the House of Representatives to join the Rare Disease Caucus. The purpose of the caucus is to bring greater congressional attention to the nearly 7,000 known rare or orphan diseases that currently have no approved therapy, by providing a forum for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. If you feel that your member of Congress should take up this cause, support laws that accelerate treatments and cures for rare diseases, encourage him or her to join the Rare Disease Caucus today!

From Karla Smith, CADASIL Patient and Trustee of CADASIL Association

This was my first visit to Rare Disease Day in Washington, DC. I spent the week by not only figuring out the Metro Train system but was pleased to learn new things and to meet new people who have a rare disease or have a child with a rare disease. Some were experienced advocates and became very helpful to me while meeting with our state Senators and Representatives. Some were there to advocate even if their child was no longer living. After meeting my one other advocate from Ohio and learning her son’s story, I couldn’t help but feel sad for what she and her family are going through. Her son is suffering from Gaucher’s Disease, which is fatal. Listening to her talk about her dying son yet being very positive and able to speak to anyone about this disease made her very much an idol to me. She brought one of her other teenage sons with her, and after going from meeting to meeting on Capitol Hill, finally a representative asked this young man if he wanted to say anything. He said, “I’ve been waiting all day to say something.” After being asked how he feels about his brother dying, he tried to talk but broke down and started crying. His mother started crying and gave him a hug, and then I started crying. No one should have to go through what this family and many others are going through and have gone through in the past. I had the experience of meeting another woman who was advocating for her daughter who passed away two years ago from Batten’s Disease. Her daughter may be lost, but she is doing whatever she can to inform others and keep her child’s memory alive. For the first time since my diagnosis of CADASIL, I have realized that it is not as bad as those diseases taking our children away from us at such young ages. I am not minimizing CADASIL, as we all know it is a devastating disease. I feel that this experience in DC has humbled me put things into perspective. I know that I would rather have CADASIL over and over instead of seeing my child or other people’s children fade away from any disease.

From Janet Mills, CADASIL Patient and Secretary of CADASIL Association

This was my first time in DC, and I had many amazing experiences advocating on Capitol Hill and meeting others in the Rare Disease Community. We are all wanting the same thing: cures and treatments for our conditions. By joining others outside our smaller CADASIL Community, our voices were heard by many state congressional members. Some thoughts: -So many rare diseases affect babies and young children. It was heartbreaking to hear parents talk about their little ones who have died or are dying. By banding together with others advocating for rare diseases, we can help everyone who suffers, whether they are young or old. We all need one another. -I was not surprised to be the only advocate there from Wyoming, as my state has a population under a half million. I buddied up with a young father from Florida who lost his 4-year-old son to a rare pediatric cancer, and we spent most of Wednesday, February 27th meeting with our representatives from both states. In the process, my Wyoming reps heard about Rob’s son’s cancer, and his reps from Florida heard about CADASIL. Partnerships! -We ARE being heard. Not only did our state representatives in the House and Senate listen to us, they and others we encountered on this trip showed compassion and gave us hope. Please check the link Barbara gave above in her summary, and contact your state congressional reps. If we could ALL ask our members of the House to join the Rare Disease Caucus, we will make an impact!

These volunteer summaries were initially contributed and featured in the March 2013 issue of EMBRACE newsletter published by CADASIL Association. Thank you all for your stories and dedication to CADASIL awareness!