Quarterly News. What an amazing year! End of Year Review. 1 st Quarter Fragile X of Central Arkansas Review of Events.

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1 Fragile X of Central Arkansas 1 st Quarter 2015 Quarterly News End of Year Review What an amazing year! Even though our group is still pretty new and we continue to seek new families and more people who have heard of Fragile X, we have had quiet a productive year. We hope to continue this motivation into 2015 and make it even better. We continue to see out new family events, fundraising ideas, and new awareness booths/events. All ideas are welcome! 2014 Review of Events We had a productive year in raising awareness, fundraising, etc. Page 2 ABLE Act The ABLE Act was passed into law! This is a savings account for people with a disability that was diagnosed before age 26. Page 4 Upcoming Events Check out our New Year s Resolutions and the fast approaching upcoming events! Page 5

2 Page Events for Fragile X of Central Arkansas From fundraising to awareness booths to painting to ribbon cuttings, Fragile X of Central Arkansas stayed busy trying to bring friends and families together and raise public awareness about fragile x. Here is a quick run down of everything we did throughout the year. Beyond Boundaries Booth This is an awareness booth set up at Beyond Boundaries Boot Scootin 5k event. This event is free. We found one family that may have a child with fragile x and provided them with a ton of resources and how to get tested. Fragile X Yard Sale This was a fundraiser for us. All items sold at the yard sale were donated. We raised just over $500. We found one family that had a young son with fragile x. Scentsy This was a fundraiser event. We raised $171, which was $120 more than last year. NFXF International Conference This was an AMAZING conference! This is highly recommended for anyone and everyone to go to at least one of these events that are held every two years. The next conference is in San Antonio, TX in All our x s will be in Texas! Lots of good information, meet with other people and their families affected with fragile x, and just a great overall experience. We can not ever say enough about this event. Let Em Know Virtual 5k This is a virtual fundraiser. Information is passed out via , facebook, NFXF blasts and posts, texts, and word of mouth. If we have enough people wanting to walk for the cause, we will set that up. Cabotfest Booth This is a great event to raise overall public awareness. We reach roughly 2000 people at each event. This year, our raffle basket was A Taste of Cabot. We made $125 off this raffle. It would have been higher if it hadn t been so cold and raining. We found 2 families with fragile x and 4 more interested in more information because they think a loved one may have it. Walk Now for Autism Speaks This event, we have to have a children s activity. The energy at this event is great. There are a lot of good resources available. We found one family with FX and two more want more information. BOO Bags Every Friday in the month of October, we delivered treat bags to people of others choice. They would pay $10 and we delivered it. This was a big hit. We sold 79 bags and held a contest to give away 2 more for a total of 81 bags! Join Cabot Chamber of Commerce This event got our name on the marquee in downtown Cabot for one week. We had a ribbon cutting that the pictures were sent out to all the members (500+). We can send an to them for an event we are doing and they will send it out for free. Continued on 3

3 Page Plan of Events for Fragile X of Central Arkansas For 2015, we hope to plan a lot of exciting events. We will continue some of the previous events. The events we are keeping are as follows: Beyond Boundaries Booth Cabotfest Booth Walk Now for Autism Speaks Let Em Know 5K Boo Bags Paint for a Purpose Scentsy NEW EVENTS We are planning on sending our Senators Valentine s Cards so they know to expect us for Advocacy Day in March. We will be planning a Spring BBQ for Fragile X families. We would like to put together a big fundraiser, such as a Color Run or benefit concert. We will restart the process of getting Fragile X Day in Arkansas. We discussed passing out Valentine s Bags on Feb. 13th. The same concept of the Boo Bags. And Christmas Cheer Bags in December. Cont Events Paint for a Purpose We held a paint night where we painted a personalized snow family picture. It was such a fun time, we discussed doing these quarterly. We charged $20 per person. It included everything they needed and provided snacks. Ornament Exchange We held our end of year business meeting first, then had a Dirty Santa Ornament Exchange. Everyone brought such cute ornaments that no one wanted to take someone else s.

4 Page 4 ABLE Act What is the ABLE ACT? The ABLE Act is a new law that amends the Internal Revenue Code to allow individuals with disabilities, like Fragile X, and their families to save money in ABLE Accounts. The money saved in an ABLE Account is not taxed. The money is also not counted as an asset when determining eligibility for government supports like Supplemental Security Income (SSI) and Medicaid. What Does It Mean for My Family? Grandparents, parents, other family and friends can leave money through a will or gift money to individuals living with disabilities without concern that it would eliminate their entitlement to benefits like SSI. The mechanism for opening an ABLE Account will be as easy as going to your local neighborhood bank. Any cost associated with opening and maintaining such an account is likely to be minimal and thus ABLE Accounts should be accessible to all. It may no longer be necessary to establish a Special Needs Trust1. This is a complicated and expensive process that requires a lawyer and may cost as much as $10,000. Individuals living with a disability can actively seek work, contribute to their own support and save for their own future without fear of losing necessary support and services. Individuals living with a disability will be encouraged to become active, productive and participating members of the workforce and of society. This will benefit everyone. When Does the ABLE Act Go Into Effect? Upon the President signing the bill, the ABLE Act became law. However, the IRS and Department of Treasury will now begin the process of establishing the rules and regulations for individuals and banks to follow. Banks will then need to implement those rules and regulations. We are hopeful that by mid-2015 these rules will be in place and you ll be able to open an ABLE Account. What s Next? The Future of Fragile X and Public Policy This is a perfect example that bringing about big change can take a long time. In the case of the ABLE Act, advocates have been making the case for its passage for eight years. This is also a perfect example that your voice matters! The next NFXF Advocacy Day is just around the corner. If you want to make a real difference for your family and all families impacted by a Fragile X mutation, join your fellow advocates in Washington D.C. on March 4-5, Author Jeffrey Cohen is the NFXF s director of government affairs and advocacy. He has previously served as a member of the NFXF Board of Directors as well as the interim executive director of the NFXF. Jeffrey has two children living with FXS who are successfully transitioning into independent and productive adults. Jeffrey holds degrees in business administration and law.

5 Page 5 As a group, we have come up with some 2015 New Year s Resolutions! This will help keep us on track for what we want to do in the New Year. 1. Get 300 Likes on Facebook. 2. Restart getting Fragile X Awareness Day in Arkansas. 3. Raise a minimum of $ Attend the CSN Summit. 5. Have a successful FX get together. 6. Have one BIG fundraiser. 7. Find 2 families that want to be a member of our group. 8. Put out a quarterly News Letter. Crystal Chivers, Leader Brittney Howard, Co-Leader Vilonia, AR Centralar.fragilex.org We must be willing to get rid of the life we ve planned so as to have the life that is waiting for us. We know it s the start of a New Year, but we are also thinking a little ahead. We want to send Valentine s Day cards to our Congressmen to let them know to expect us on Capitol Hill in March for Advocacy Day!! - Joseph Campbell This is an annual event sponsored by the NFXF. It is a 2-day event in which advocates participate in a training session for the next day s visit with their Members of Congress (MOC). The advocates go to Capitol Hill to share their story and advocate on behalf of the Fragile X community. Parents, family members, and self-advocates living with Fragile X are encouraged to take part in this powerful experience! March 3-4, 2015 We ll see you there!

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