NEWSLETTER - April 2004

The following are minutes from the PDSSN annual business meeting that took place on Sunday, April 5, 2004 from 3-5PM The ARC/Enrichment Center and a follow-up meeting with Louis Pugh, Director of the Enrichment Center that took place on April 13.

Annual meeting attendees: Bill Donohue, Kristine Drum, Stephen Lawson, Alicia Lawson, Bryan Lilly, Jacob Dahlin, Aleta Lilly, Helen Johnson, Traci Newton, Sherry Jeffries, Scottie Jeffries, Kathy Anders, Anike Fuller, John Fuller, Deborah Woolard, and Phyllis Marshall-Rice

Members introduced themselves and listed one thing that they wanted to accomplish at the meeting and/or program they wanted to see continue. The items listed by the group included the Buddy Walk, Family Gatherings, the PDSSN Mission Statement, educating others about Down syndrome, finding out where we stand financially, and having firm consistent leadership in place that would include officers and an advisory counsel. The group was polled for other committees or boards they sit on related to developmental disabilities. We are well represented in the community with members on several CenterPoint Committees, The Enrichment Center/ARC Board, Triad First in Families, the RICC, and the advisory council of Parents Together.

Deborah Woolard, Phyllis Marshall-Rice and Kristine Drum led the meeting in Vanessa Mouton's absence. Deborah and Phyllis served as co-chairs prior to the election of co-chairs Vanessa and Mike Cline. Vanessa Mouton resigned from co-chair at our February gathering just prior to her two year term ending. New officers were elected for a two year term. There were no dissents. The new officers are: Co-chairs Sherry Jeffries and Jacob Dahlin, Treasurer Kristine Drum, and Secretary Aleta Lilly.

PDSSN Advisory Council members were elected. The PDSSN Guidelines call for professional/community members and at least half the members being parents of children who have DS. All members are required to be registered members of the PDSSN. Deborah and Phyllis will serve on the council because of long term involvement with PDSSN. Bill Donohue is on the council as the representative to the EC/ARC Board. Additional parent Counsel members are Traci Newton, Stephen Lawson, and John Fuller. Community members will be Diane Hulburt and Will McGuirt. A group member who has Down syndrome has yet to be named. The PDSSN is required to meet at least quarterly and can meet more often if needed. All present voted the counsel in and there were no dissents. First Counsel Meeting is May 11th.

Other PDSSN positions were discussed. A "Sunshine" co-coordinator to visit new parents and deliver baskets to PDSSN families who have an ill child or family member with DS in the hospital for a week or more was named. Other positions already in place will continue but need new volunteers (refer to page 3).

Our account is in good shape, primarily from our three previous Buddy Walks.

We also discussed being a parent support group under the umbrella of The EC/ARC as opposed to becoming an independent group by establishing 501-C3 status as non-profit and tax-exempt group. The advantages and disadvantages of both options were discussed at length. The decision was made with input from the annual meeting and follow-up discussions with Louis Pugh to remain associated with The EC/ARC for the present with the goal to become an independent non-profit tax-exempt group within two years.

PDSSN memberships will be at 2 levels. As an Associate Member, you will receive the newsletter via email free of charge and will be welcome at all meetings, events, and group functions. As a Registered Member, you will have all the benefits of an associate membership plus be entitled to vote at our annual meeting. You will also be eligible to serve on the Advisory Counsel. This level of membership is for those individuals, families, self-advocates, and professionals who want to take an active role in guiding the PDSSN to best serve all of its members and requires a nominal annual membership fee. Because of our association with The EC/ARC, you can become a Registered Member of the PDSSN & The Arc when you pay $25 dues to The Arc of Forsyth County. This option for joint membership is encouraged because of The Arcs long standing commitment to advocating and serving families. A second Registered Member option is to pay $10 directly to the PDSSN. Both options allow each parent a vote at PDSSN meetings. Only paid Registered members can vote and apply for group benefits such as conference scholarships. Money to assist any family that cannot afford membership was agreed upon. Guidelines have not been put in place yet and requests at this point would be on a case-by-case basis to the co-chairs. Membership proposals were voted on and unanimously agreed upon. You should be receiving an invitation to join The Arc of Forsyth County soon, so watch your mail. If you choose the option of joining just the PDSSN please send your $10 membership dues to Deborah Woolard/PDSSN at 7045 Whitby Ave, Clemmons, NC 27012 along with your name, address, phone number, and email address. Please include your child's name and date of birth.

We also brought forth several budget proposals. The Sunshine committee donation of up to $50 per hospitalization was agreed upon. This is for a gift basket for families who have a family member with DS that is hospitalized for more than one week. We are maintaining the (4) $1000 scholarships for national conferences as well as scholarships to attend local programs. NDSS conference is in July in Washington, D.C. and NDSC conference is in August in Minnesota. If more than 4 requests are made the Advisory Council will either decide who goes or allocate more money for additional scholarships. We agreed to continue to fund the PDSSN Resource notebook project. We also agreed to expand the Spanish version with the assistance of a paid Spanish-language interpreter and to hire a Spanish-language interpreter and baby sitters to attend Family Gatherings. Members agreed to send correspondence to all Associate and Registered members. Members will be polled as to the method they would like to receive materials and e-mail will be used when possible to reduce mailing costs. Funds will be budgeted to pay a teen/adult person with Down syndrome or other mental disability to help with mass mailings. The food for Family Gatherings will continue to be paid for from the PDSSN budget. Gatherings will continue to be scheduled at least four times a year with the Buddy Walk serving as one event. A proposal (copy unavailable at the meeting) for reimbursing $50 per classroom and $100 medical expenses per child was presented by Kristine and tabled for further discussion. It will be revisited at a later time. A proposal to contribute a portion of future Buddy Walk profits to Triad First In Families to be used solely for the benefit of individuals with Down syndrome or their families who qualify for TFIF funds and contributing to the NDSS was also tabled. An awards banquet similar to the one hosted annually by the TDSN was discussed as a possible future function.

Messages and Events to come:
" The Buddy Walk will be held Saturday, June 19th at Tanglewood Park. Several members felt very strongly about this and volunteered to head this years event. Stephen Lawson, Sherry Jeffries, and Jacob Dahlin are going to spearhead a smaller version of the walk - Walkers can wear shirts from previous years. T-shirts left over from last years walk will also be available. Contact Stephen at 998-4595, Jacob at 992-3288, or Sherry at 993-4751 to see how you can help with this years Buddy Walk. The more volunteers, the greater our chance for this event to succeed. This has been the one event that has brought everyone together, if you want to see it continue it's up to each of you to assist, please call these parents and offer to help. Website is www.piedmontbuddywalk.org
" Bill Donohue is planning a "Father's night out" golf event. Contact at bdonohue@triad.rr.com or 734-2848 him for more information.
" The Special Children's School annual golf tournament is Friday, June 18, 2004. Mark your calendars and show your support for a school that has helped so many of our children.
" Traci and Brian Newton are hosting the August Family Gathering. It will be at Pfafftown Baptist Church on Saturday, August 14, 2004 from 5-7PM. Dinner will be served. RSVP to Traci at 463-5632 or TDeertrackfarm@aol.com
" Notebook revisions are in process - you still have time to submit or revise your family story. Please let Deborah Woolard know if you would like your story listed on the web site as well as in the notebook.
" The mailing lists are being updated so please let Deborah Woolard know of any changes so Aleta can start her new job with an accurate list. If you are on the list and want to be removed, please let Deborah know that as well.
" If you have an email address please send an email message to Deborah Woolard at Woolard@triad.rr.com so she can check include it in our master list.
" If you are willing to receive material electronically rather than in written form please note that in your email. We appreciate the opportunity to save mailing costs. Newsletters will also be posted on our web site at www.pdssn.com
" Check the web site for frequent updates including regional activities, research studies, and PDSSN news. If you have items you would like to see included in the web site, please contact Deborah.

Thanks to all that took time out of their Sunday to participate in the PDSSN's annual meeting. All attendees left feeling like a lot had been accomplished and that we were ready to move forward. Let's keep the momentum going. Think about how you can help and volunteer. Now that we have several key positions filled we are asking others to volunteer as they can - hosting family events, assisting new members, and serving on the Buddy Walk committees. Opportunities are out there for those that want to make a difference. Your participation will make us stronger. Listed below are opportunities for volunteering and a list of those who have already volunteered. We need everyone to volunteer to assist the group in some way. Let us know your skills such as web-site management, fund raising, brochure design, setting up workshops, organizing folks, newsletter writing - whatever your gift we can use your talent.

Positions and options for volunteering
Co-chairs: Jacob Dahlin and Sherry Jeffries
Treasurer: Kristine Drum
Secretary: Aleta Lilly
Board Members: Phyllis Marshall-Rice, Traci Newton, Stephen Lawson, John Fuller, Deborah Woolard, Bill Donohue, Will McGuirt, Diane Hulburt, and PDSSN officers.

2005 Buddy Walk chair or co-chairs: ___________________________________________

2005 Buddy Walk volunteers and group leaders (many) ____________________________
T-shirt committee: Ron Rice & Phyllis Marshall Rice. Advertising, Publicity, Food, Entertainment, etc.

Newsletter editor: Helen Johnson & _____________________ .

Community Liaison: Deborah Woolard

Summer Gathering: Traci and Brian Newton

Fall Gathering: Varners & ______________________

Winter Gathering:_____________________

Sunshine Committee chair and two members: Patti Varner, _____________, ___________.

PDSSN notebook committee: ____________ & _________________ & ________________.

Notebook printing committee: Mack McGee and Bill Donohue (1 -2 more needed - good task for fathers). ________________ and ____________________.

Notebook collating committee: Nita Canon (2 additional needed) ___________ & ______________.

Father's Nights Out committee: Bill Donohue (1-2 others needed) ____________ & ____________.

Mother's Nights Out committee: (2-3 needed) ____________________ & ____________________.

Applying for tax exemption: ________________ & __________________.