Monthly Archives: May 2010

Went to the Spa Today

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Bill and Hayley Johnston run again for Ramona

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Bill and Hayley Johnston run again for Ramona

Wednesday, May 12, 2010
Bill Johnston with wife Ramona, son Jared and daughter Hayley

By Bill Johnston
Member, HDSA-San Diego Board

Yes, I’m back, and so is my daughter Hayley as we once again will be 

Bill and Hayley Johnston run again for Ramona

Wednesday, May 12, 2010
Bill Johnston with wife Ramona, son Jared and daughter Hayley

By Bill Johnston
Member, HDSA-San Diego Board

Yes, I’m back, and so is my daughter Hayley as we once again will be RUNNING TO CURE HD in the San Diego Rock ‘n’ Roll Marathon on June 6 to raise money to cure Huntington’s disease, the fatal brain disease that has stricken my wife and Hayley’s mother. I’m proud of the commitment she’s making to run again for her mom and raise money and awareness to end this horrible disease that threatens her own future.Ramona has been living in a skilled-nursing home for the last three years. The disease has taken most of her physical and mental abilities, including her ability to walk, talk, chew or swallow. However, her heart and spirit still shine on. As Hayley says, “Each time I see her she manages to make me laugh, and her smile always brightens my day.”

With your help, we have raised more than $500,000 in pledges and matching funds through nine years of RUNNING TO CURE HD. See the long list of last year’s generous friends by clicking on this file: Friends for a Cure 2009. I apologize if your name is missing. Please let me know if I blew it. It’s important to me.

Please consider supporting Hayley once again as she runs to end HD. NEW: you can donate online at http://www.firstgiving.com/runningtocurehd. You also can return the form below to me or Hayley via email or fax (858-292-2760), or mail it to Hayley Johnston, 2095 Monaco Ct., El Cajon, CA 92019. Your contribution is tax deductible (Tax ID 13-3349872). Both Hayley and I will proudly wear your name on our back and be grateful every step of the way. To learn more about Huntington’s disease, you explore this website.

THANK YOU … again. Your help will end this horrible disease. 

Bill Johnston                                                                                         Hayley Johnston

619-846-0106                                                                                      619-277-4046

Bill.Johnston@chargers.nfl.com                                                     
HJohnston@umail.ucsb.edu

Yes, I will support Hayley and RUNNING TO CURE HD.  Giving options:

1.     Donate online at http://www.firstgiving.com/runningtocurehd.

2.     I will make a straight donation of $_____ or donate $_____ per mile.

3.     ____ Check enclosed (payable to HDSA-San Diego; tax ID 13-3349872)

4.     ____ Credit Card (Visa, MasterCard or American Express)

Credit Card Number (with expiration date) ___________________________________________________

Name
Address
City, State, Zip
Phone
E-mail

in the San Diego Rock ‘n’ Roll Marathon on June 6 to raise money to cure Huntington’s disease, the fatal brain disease that has stricken my wife and Hayley’s mother. I’m proud of the commitment she’s making to run again for her mom and raise money and awareness to end this horrible disease that threatens her own future.Ramona has been living in a skilled-nursing home for the last three years. The disease has taken most of her physical and mental abilities, including her ability to walk, talk, chew or swallow. However, her heart and spirit still shine on. As Hayley says, “Each time I see her she manages to make me laugh, and her smile always brightens my day.”

With your help, we have raised more than $500,000 in pledges and matching funds through nine years of RUNNING TO CURE HD. See the long list of last year’s generous friends by clicking on this file: Friends for a Cure 2009. I apologize if your name is missing. Please let me know if I blew it. It’s important to me.

Please consider supporting Hayley once again as she runs to end HD. NEW: you can donate online at http://www.firstgiving.com/runningtocurehd. You also can return the form below to me or Hayley via email or fax (858-292-2760), or mail it to Hayley Johnston, 2095 Monaco Ct., El Cajon, CA 92019. Your contribution is tax deductible (Tax ID 13-3349872). Both Hayley and I will proudly wear your name on our back and be grateful every step of the way. To learn more about Huntington’s disease, you explore this website.

THANK YOU … again. Your help will end this horrible disease. 

Bill Johnston                                                                                         Hayley Johnston

619-846-0106                                                                                      619-277-4046

Bill.Johnston@chargers.nfl.com                                                     
HJohnston@umail.ucsb.edu

Yes, I will support Hayley and RUNNING TO CURE HD.  Giving options:

1.     Donate online at http://www.firstgiving.com/runningtocurehd.

2.     I will make a straight donation of $_____ or donate $_____ per mile.

3.     ____ Check enclosed (payable to HDSA-San Diego; tax ID 13-3349872)

4.     ____ Credit Card (Visa, MasterCard or American Express)

Credit Card Number (with expiration date) ___________________________________________________

Name
Address
City, State, Zip
Phone

E-mail

Qualcomm Shoot to Cure HD Since 2002 HDSA-San Diego

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Qualcomm Shoot to Cure HD Since 2002 HDSA-San Diego has put on the town’s best outdoor party, the Shoot to Cure HD. Guests are treated to food and drinks from more than 20 of San Diego’s favorite eateries, a behind-the-scenes tour Chargers Park, a commemorative Shoot T-shirt compliments of Reebok, and moments they’ll never forget. This also is the Chargers players’ favorite offseason event, so they stop by and join in the fun. The highlight of the night is the speed-free-throw competition that’s unlike anything you’ve ever seen. Teams of ten select five of their 10 guests to make as many free throws as possible in three minutes. Sounds simple, right? But as the party grows and beverages are consumed and the crowds gather around, crazy things seem to happen. The 2010 Qualcomm Shoot to Cure HD, presented by Cymer, is also a great opportunity for business networking. The 2010 Qualcomm Shoot to Cure HD will take place on Friday night, June 11, at Chargers Park. Click on this link to view or download our exciting save-the-date flyer: 2010 Qualcomm Shoot to Cure HD Flyer. To buy tickets now, click here or on Antonio Gates’ picture! Click on the following link to see how else you and your organization can participate: Shoot 2010 Sponsor Letter. To learn more about this year’s Qualcomm Shoot to Cure HD, including the link to the official 2009 Shoot video, click on the articles below.One Too Many’ campaign to boost fundraising New! Sunday, May 9, 2010 Chapter aims for local and national record to fight HD. The 2009 Cymer Shoot to Cure HD video … all fun, all night

Couple tackles first half-marathon together to honor HD-stricken father

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Couple tackles first half-marathon together to honor HD-stricken father

Monday, May 10, 2010
Half-marathoner Lindsey with father Anthony Zan and brother Eric

By Lindsey ZanOn Sunday, June 6th, my boyfriend Matthew Magorien and I will be Running to Cure HD in the San Diego Rock N’ Roll Marathon to help raise money to fund research towards a cure for Huntington’s disease.

Huntington’s disease has impacted my life since I was 11 years old, when my father, Anthony Zan, was diagnosed.

I have seen my father go through various stages of physical deterioration. I have watched him lose his ability to work, drive, ride a bike, talk, eat, and finally walk, stand, or even sit up straight.

I have also seen him experience several serious behavioral and psychiatric symptoms including OCD, depression, paranoia, psychosis, apathy and rage.

My father is currently living in a care facility. The only movements I see him make now are ones he cannot control. He can’t talk or communicate in any way and has to be fed a pureed diet by trained employees. He is 6′ 1″ and barely 130 lbs.

It’s been 15 years since my father’s diagnosis and a lot has happened since then. My mother died from cancer, my brother tested negative for HD (I’m still living “at risk”), and I graduated from the University of Texas. I have been living in San Diego for nearly 5 years working on my Ph.D.

I met Matthew, the love of my life, through one of my best friends. I have confided in him that I wanted to be more involved in the HD community. With his support, we decided to start actively volunteering with HDSA-San Diego. The Rock N’ Roll Marathon is the first event we have had the opportunity to volunteer for.

We have committed to raise a minimum of $3,000 for HD research. We are excited about this challenge and are looking forward to building relationships in the San Diego community.

Coincidentally, June 6th (race day) is the anniversary of my mother’s death, so Matthew and I will be running our first 13.1 miles EVER in honor of both of my parents, Anthony and Elise Zan.

The only way research for a cure can go forward is through funding. That means people like you!

Please consider supporting HD research and Matthew and me in our first half-marathon!

To donate or learn more about HD and how it has affected me click on my First Giving page here and on my Facebook page here.

With your support, we are one step closer to ending this horrible disease! THANK YOU so very much!

(For more articles and background on Running to Cure HD, click here.)

HDSA rallies advocates to push for passage of benefits bill

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HDSA rallies advocates to push for passage of benefits bill

Saturday, March 6, 2010

Continuing their efforts to obtain a floor vote on a bill that would make it easier for Huntington’s disease patients to obtain Social Security and Medicare benefits, HDSA advocates are working this month to obtain the 100th signature on H.R. 678 and encourage the introduction of a companion bill in the U.S. Senate.

As of March 6, 96 members of the U.S. House of Representatives had co-signed the bill, The Huntington’s Disease Parity Act of 2009. The bill would revise the Social Security Administration’s outdated criteria for granting disability status and remove the two-year waiting period to receive Medicare benefits.

HDSA has established March 18, Advocacy Day, as the target date for the 100th signature. On that day more than 100 advocates will visit members of both the House and the Senate in Washington, D.C., in order to build support for the legislation.

In conjunction with Advocacy Day, HDSA is organizing a national call-in effort. HDSA will provide advocates with congressional phone numbers and talking points for advocates to make the case about H.R. 678.

Advocates are now working to convince senators to introduce a companion bill in their chamber. The bill must pass both houses of Congress in order for it to become law.

By calling representatives and senators, members of the HD community can educate leaders about HD and the need for the new legislation. It’s also an opportunity for HD-affected families to share their personal stories and raise greater awareness about the need to find treatments and a cure for HD.

Members of the HD community can also write their representatives and senators.

Click here to see the list of co-sponsors and further details on the bill. Click here to invite your family and friends to join our effort by forwarding a message to them.

Since HDSA needs support from both houses of Congress, you can also send an email asking your two Senators to introduce the Huntington’s Disease Parity Act in the Senate.

For HDSA advocacy updates, please click here.

For more information, contact HDSA-San Diego advocacy chair Misty Oto by clicking here, HDSA’s national manager for advocacy and program services, Jane Kogan, by calling 212-242-1968 or clicking here, or HDSA Washington representative Joseph LaMountain by calling 202-288-5124 or clicking here.

For previous coverage of the bill, visit our Advocacy pages by clicking here.

Click here for the text of H.R. 678.

Click here for background on the need for H.R. 678.

HDSA Advocacy on Facebook.

‘Team to Cure HD’ raises $15,000 in Carlsbad Half Marathon

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‘Team to Cure HD’ raises $15,000 in Carlsbad Half Marathon Friday, March 5, 2010 Dale Larson runs for sister Joyce, who has HD Raising more than $15,000, runners and volunteers showed their support for those affected by Huntington’s disease at the Carlsbad Half Marathon on January 24 in Carlsbad, California. Runners from Team to Cure HD gathered pledges, and volunteers provided course support. Proceeds from the event go to the care of HD patients and research towards treatment and a cure. Among the runners was HDSA-San Diego board member Misty Oto. Misty took up running marathons and half marathons as a means to get the word out about a “little-known disease that affects more people than cystic fibrosis,” she said. Misty’s mother died of HD in December 2007, and her HD-stricken brother suffered a fatal motorcycle accident last November. “The hereditary nature of the illness makes it devastating to families,” Misty said, who ran in support of twelve-year-old Terry Leach of San Diego. Terry has juvenile Huntington’s disease. “I ran to honor Terry’s never-ending determination to live a normal life and his continuing efforts to battle HD and make others aware of it,” Misty said. Despite having severe difficulty eating, drinking and walking, Terry gets straight As and always wakes up and goes to bed with a smile. Click here to see the North County Times’ coverage of Misty and Terry. Terry and his family watched the race, and Terry gave high fives to Team to Cure HD runners as they passed by. HDSA-San Diego congratulates the top fundraisers from Team to Cure HD: Kristen Bentz, Dale Larson, Amanda Bowen, Regina Serbin, Misty Oto, Marci Paulissen & Jennifer Shih. HDSA-San Diego thanks Vons and Einstein Bros. Bagels for donating food to the event. Special thanks go to Charities in Motion for supporting fundraising efforts. Click here to view our photo gallery of the race.