Colorado Sping 2011 Newsletter

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McKaila Steffes Memorial NF St. Patrick’s Day Parade

All Family and Friends Welcome!

Join Us behind the CTF Banner in this Annual Denver LoDo Event

Saturday, March 12th @ 10am Remember to bring candy for the parade

Lunch: As a tradition in past years, families have gathered at La Loma Mexican Restaurant at 2527 W. 26th Ave after the parade.

Seating is limited, so please RSVP by March 5th

T-‐Shirts Available for Purchase $10 in all sizes Youth sizes: M & L also Adult sizes: M & L & XL

RSVP & T-‐Shirts: Shelley Pesta Phone: (303) 770-‐7791

Email: [email protected]

JAKE SENSENBAUGH

DO IT FOR JAKE! Together We Can Make A Difference… Please visit Jake online at www.doitforjake.com to find out how you can help and make a difference for Jake.

Go Jakester!

Colorado Chapter PO Box 101357

Denver, CO 80250-‐1357 Phone: (303) 460-‐8313

President: Mark Ebel [email protected]

[email protected] (303) 734-‐9942

Secretary: Shelley Pesta [email protected]

(303) 770-‐0552

Treasurer: Eric Cahn [email protected]

(303) 322-‐4194

OUTREACH CONTACTS: Denver: Jane Cahn


Colorado Springs: Dana Stanley


Grand Junction: Cathy Green


Monte Vista: Susan Carroll


Colorado NF Information Line

(303) 460-‐8313

NF Clinic at Children’s Hospital (303) 724-‐2370

Adult Genetics Clinic at University Hospital (303) 493-‐8333

Children’s Tumor Foundation: www.ctf.org (800) 323-‐7938

Spring 2011 The Children's Tumor Foundation is a non profit 501(c) (3) medical foundation, dedicated to

improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

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The President’s Letter Mark Ebel, CTF Colorado Chapter President

2011 NF Research Funding

In late December, Congress passed a continuing resolution related to the 2011 budget that included $13.75 Million for NF research through the CDMRP-‐NFRP program (the same amount that was included in the 2010 budget). This was deemed to

be a very positive development given the current emphasis in Washington on finding ways to cut federal spending. In early January however, the new Congress decided to put a hold on this funding, and we still don’t know when or if the 2011 CDMRP funding will be finalized. I want to remind everyone of the

significance of this funding for ongoing NF research programs, and the importance of all of your individual efforts to contact Senators and Representatives in support of this program. We will keep our fingers crossed that the 2011 funding for NF research is left intact!

University of Colorado JFK Partners and Children’s Hospital Translational Neuroscience Nexus

for the Study of Intellectual and Developmental Disabilities (COMIRB # 08-‐1276; Date: 11/30/09; Version #2.0)

Learn more about the Nexus Registry and Biobank. This is the first registry in the nation that combines clinical information with biological samples to help research developmental and intellectual disabilities. It is our hope that through this effort, we’ll be able to greatly accelerate our understanding of intellectual and developmental disabilities and by doing so develop better diagnosis and treatment protocols.

Contact person: Sondra Rosendahl ([email protected]), 303-‐724-‐2349

6th Annual NF Gingerbread House Event The 6th annual Gingerbread House event was a feel-‐good event all around. As holiday music filled the air, 25 gingerbread houses were iced and decorated, fistfuls of candy were devoured by children (& adults!), families exchanged updates and news, and newborn Aiden Medvidofsky made his debut at a CTF event. We even decorated a house to deliver to our dear friend, Jake Sensenbaugh, who could not attend the event this year. At the end of the day, we also donated all the leftover candy to a 1st grade teacher attending the festivities, for the children at her low-‐income school to use during their own gingerbread house decorating event. Fun, festive events like these help to build the strong sense of community in our chapter!

Hosted by: Catherine Laskey & Mark Ebel

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CTF International NF Summer Camp

Young Adults, ages 12-‐21

July 16-‐22 New Camp

July 23-‐29 Reunion Camp

Location: Utah Cost: $650 plus airfare – Scholarships Available

Website: www.ctf.org/camp

Contact: Patrice Pancza Phone: (800) 323-‐2938, ext 235


Texas Annual NF Family Camp

September 9-‐11, 2011

Location: Burton, Texas (Central Texas Camp for All)

Cost: $100 plus transportation Website: www.texasnf.org And: www. Campforall.org

Contact: Cindy Hahn Phone: (800) 942-‐8476


Adams Camp

Family and Independent Camps Available for Toddlers through Teens

Dates: Multiple Sessions

Location: Snow Mountain Ranch Granby, Colorado

Website: www.adamscamp.org

Phone: (303) 563-‐8290 Email: [email protected]

Address: 5251 South Quebec Street; Suite 150

Greenwood Village, Colorado 80111

The Colorado Junior Wheelchair

Sports Camp

Day Camp Only for Grades 1-‐12

Date: Early June Expect Actual Date to be set in April

Location: Metro Denver Area

Cost: No Charge

Contact: Beth Sensenbaugh Phone: (303) 452-‐6743


ANNUAL CAMPAIGN, SPECIAL EVENTS, & DONORS 9/15/10 – 12/31/10

$25 -‐ $49 Dana Stanley $100 -‐ $199 Byron & Phyllis Beaty Denise & Levine Ortiz Ben & June Wood (in honor of Dr. Eva Sujansky) $200 -‐ $250 Patti Davis (in honor of Kevin Cahn) Joan Gonzales IBM $850 Family & Friends of Jake Sensenbaugh $2,000 Maureen & Jerry Hunter $2,500 Newmount Mining $4,000 Family & Friends of Davis Ebel $5,000 Kara & Scott Miller Thank you to everyone who made contributions directly to CTF National, marathons, or Denver & Loveland Walks. Please remember “COLORADO CHAPTER” when donating.

FISCAL YEAR END REPORT The Colorado CTF Chapter’s Fiscal Year Ended 12/31/10 Information on Income and Expenses for the Chapter:

Income: Fundraiser & Individual Contributions $24,938.39 Corporations 1,203.74 United Way/Community Health Charities 3,168.55 Special Events 34,939.51 Total: $64,250.19 Expenses: (see note) $14,065.82 Net: $50,184.37 Note: The expenses include Printing, Postage and Shipping, Newsletter, Telephone, Office and Other Supplies, Support Groups, Travel, Professional Fees, Meeting expenses, Food and Beverage, Special Events and Miscellaneous Expenses.

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Children’s Tumor Foundation Colorado Chapter PO Box 101357 Denver, CO 80250-‐1357

RETURN SERVICE REQUESTED

NON-PROFIT ORG. U.S. Postage

PAID Golden, CO

Permit No. 5323

McKaila Steffes Memorial NF St. Patrick’s Day Parade

All Family and Friends Welcome! Join Us behind the CTF Banner in this

Annual Denver LoDo Event

Saturday, March 12th @ 10am Specifics on Meeting Location via email only!

Please provide current email address if you are not currently receiving Chapter updates via email

For Additional Information, contact:

Shelley Pesta: [email protected]

11th Annual Women’s Day Gathering Saturday, April 16, 2010 9:00 a.m. to 1:00 p.m.

Draper Home

11776 Glencoe Street Thornton, Colorado

RSVP by April 8th to:

Brook Draper: (303) 452-‐1334 or [email protected] Jane Cahn: (303) 322-‐4194 or [email protected]

Box lunches ordered by request only

Join us in the unique opportunity to listen, learn, and share

Register at: www.CTF.org

Registration Opens Feb 21

Colorado Sping 2011 Newsletter

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