Read on and get a sneak peak at the exciting celebrities that will be joining The AFA at this year’s Kokopelli Ball in October, and don’t forget to read this month’s featured article, The Elusive Egg.

• 5000 Strides
• Fertility Dream 5K
• Kokopelli Ball
• The Elusive Egg

Fertility Supporters Take ‘Baby Steps’

An estimated 300 racers from Morris Township, New Jersey and the surrounding areas turned out at Loantaka Park on June 14, 2004, for 5000 Strides: A 5K for the American Family. Certified by USA Track and Field (USATF), and open to the public, the race was attended by friends and family who cared about fertility and family building.

The race’s organizer, Tracey Blyth, with the assistance of the Reproductive Medicine Associates (RMA) and On Your Mark Productions, partnered to create a fun, charitable event, where participants of all ages had the opportunity to go the distance by running or walking. One racer in attendance brought along his two sons, both of whom were conceived with IVF. He and other participants ultimately walked away with a sense of community and pride. At the finish line, everyone was treated to entertainment, prizes and other refreshments. In the end, the 5K was a rousing success!

5000 Strides: A 5K for the American Family would not have been possible without Tracey’s vision and the support received from RMA’s Dr. Paul Bergh, Dwight Ryan and Carleen Implicito. Based on personal struggles with fertility and starting her own family, Tracey felt compelled to organize an event that would demonstrate support, increase fertility awareness and raise money for programs and organizations conducting research on assisted reproductive technology (ART).

A portion of the proceeds collected from 5000 Strides will be contributed to “Footprints: The IVF Children’s Health Study”, a research study designed and conducted by The AFA to track the health of IVF children. "The AFA admires Tracey's creativity and drive, and congratulates her very successful fertility awareness event in her own backyard. She serves as a model of empowerment for other fertility patients who want to do something positive for a great cause," said Pamela Madsen, Executive Director of The AFA. "We are extremely grateful for Tracey's generous donation to ‘Footprints.’ It's support and activism like Tracey's that will ensure healthy futures for generations of IVF children to come," added Madsen.

The AFA would like to extend their warmest wishes to Tracey, as she is anticipating the birth of her first child in the upcoming months.

The Fertility Dream 5K
On your mark. Get set. Race for a great cause!

The AFA invites its members and friends across the country to participate in a healthy activity for a great cause. The AFA’s first Fertility Dream 5K will take place on Sunday, August 1, 2004 in Chicago. The AFA seeks to attract a nationwide community of people who care deeply about fertility issues and who would like to raise fertility awareness.

The AFA is working closely with groups and individuals nation-wide to ensure runners and walkers from all over the country have a Fertility Dream 5K in their area. For those who do not live in Chicago, The AFA is coordinating satellite races in other cities across the nation, including New York, Philadelphia, and West Haven, CT, Keene NH, just to name a few. Please contact The AFA at (888) 917-4777 to register.

If you are interested in participating in the race or sponsoring a participant, please visit our Web site – www.theafa.org - or call (888) 917-4777. Once you have registered, you can use the Fertility Dream 5K donor form, a helpful tool in collecting and managing donations. Participants in the Chicago area who collect at least $300 will be cordially invited to attend a luncheon with John “The Penguin” Bingham, renowned Runner’s World columnist and author of “The Courage to Start: A Guide to Running for Life.”

Your hard work pays off! Donations collected from the Fertility Dream 5K will help fund “Footprints: The IVF Children’s Health Study,” a comprehensive study the health and development of IVF children. Funds will also ensure that The AFA’s “No Barriers” program remains free for all those who need it.

So what are you waiting for? Dust off your running shoes and register today!

Kokopelli Ball 2004

The 2004 Kokopelli Ball, The AFA’s annual fundraising gala, will take place at Pier 60, Chelsea Piers in New York on Monday, October 4.

Every year the Kokopelli Ball is attended by approximately 500 guests from the reproductive health community, including physicians, researchers, scientists, lawyers and mental health professionals. Together we enjoy a night of dinner and dancing, and we recognize friends in the community who have devoted their time and energy to helping The AFA advocate patient and public awareness.

At this year’s Kokopelli Ball, we will honor the work of dedicated medical professionals for their tireless effort to make dreams come true for so many couples. Members and friends of The AFA are invited to join our special guests, acclaimed actress Brooke Shields, actor B.D. Wong, and Olympic Gold Medallist Dara Torres, who will award those individuals and the media for their outstanding ability to break new ground and shed light on fertility and adoption.

Please consider joining us for the 2004 Kokopelli Ball and help us celebrate and congratulate these distinguished professionals. Stay tuned for more information in the next few months. If you have any questions or would like to reserve your tickets today, please contact Lori Masi by phone at (877) 917-4777.

Stay well,

Pamela Madsen
Executive Director

Connections Online
Sessions Schedule - July

July 6, 2004, Tuesday
Speaker: Edward Marut, M.D. (Fertility Center of Illinois)
Topic: The Decision to Do IVF: When, Where and How
Time: 8-9 PM, EST

July 14, 2004, Wednesday
Speaker: Darryl L. Carter, M.D (Medical Director of Nora, LLC)
Topic: Immunologic Treatment for Recurrent Miscarriage
Time: 8-9 PM, EST

July 20, 2004, Tuesday
Speaker: Melissa B. Brisman, Esq.
Topic: Reproduction and Law: Gestational Surrogacy, Ovum Donation and Embryo Adoption
Time: 8-9 PM, EST

July 27, 2004, Tuesday
Speaker: TBA
Topic: Beginning Treatment
Time: 8-9 PM, EST

Click here for Connections Online

5000 Strides Photos

Wanda Hofesgang, BS, RN, participated to help increase fertility awareness in her community.

Approximately 300 runners took to the streets of Loantaka Park on Monday, June 14, 2004. A portion of the race's proceeds will be donated to The AFA's " Footprints: The IVF Children's Health Study".

Dwight Ryan and Anne McGuire from Reproductive Medicine Associates (RMA) attended 5000 Strides.

(Left to right) The race organizer, Tracey Blyth, and Carleen Implicito, RMA, prepare the awards for the race winners.

The Elusive Egg: Making the Transition to Ovum Donation
An AFA Fact Sheet

Every year, thousands of us infertile people are felled by the same blow: our eggs, the vessels of the genetic legacy we hoped to pass down to our progeny, will never make a baby. There is an option - one that’s delivered the joys of pregnancy and parenthood to many: ovum donation.

If you’ve reached this point, chances are you’ve already tried everything, trod the rocky road from synchronized sex to hormone-stoking drugs to IVF, and it’s been a descent into the depths of frustration and disappointment. At the same time, you can’t help but notice, and get furious at, the endless parade of women – healthy or not, prone to excess or not, young or mature – who seem to be able to conceive at will.

For those of us in this tempest-tossed boat, early or on-time menopause, genetic glitches or the aftereffects of disease or medical treatment may be the culprit. But when it comes to a lack of viable eggs, the usual suspect is age. We’re born with all the eggs we’ll ever have, but time siphons them away – a winnowing that can start in your late 20s, kicks in after 35 and is hard-boiled fact after 40. The reality: By then, the odds are simply stacked too high against our aging eggs. Which leads us to ovum donation.

Essentially, ovum donation uses eggs culled from younger women to make it possible for us to experience pregnancy and childbirth. It’s a legitimate choice that thousands have made with striking success. The likelihood of a babe in arms after donation is between 40% and 45%, startling when compared to the 5.3% birth rate to women, average age 43, using IVF and their own oocytes. If you’re over 40, using these hardier donated eggs not only boosts your chance of conceiving but cuts your risk of miscarriage and birth defects.

Opting for an outsider’s ova, of course, is no simple matter. Doctors may speak of it clinically, as another means to an end. And it is. But for you, there may be a flood of feelings to filter, fret over and finally resolve – from surrendering the dream of a genetically linked child, to deciding what to disclose to that child and others.

You may grapple with deep-rooted issues of identity, inheritance and connection: As the prospective mother in this new equation, your baby may have your partner’s genes, but not yours. On the plus side, if you conceive with a donor egg, you’ll control the all-important fetal environment, feel the flutters and kicks, give birth and fulfill your desire for family. Says Dr. Eric Surrey of the Colorado Center for Reproductive Medicine: “Ovum donation is not so much comparing to what is ideal, but to what is possible.”

Here’s what to consider while making the transition to ovum donation:

GIVING UP, GOING FORWARD

If your physician has suggested egg donation, chances are you’ve already done battle with the feelings of shame, inadequacy and failure that inevitably accompany infertility. Expect the ovum donation option to scramble your emotions even more: Not only do you need medical intervention to do what most women seem to do with ease, you’ll have to tap an outsider – a relative, friend or complete stranger - to help you do it.

At this stage, grief is likely the operative emotion. You’re giving up your dream of a biogenetic daughter or son – a child with your curly hair or lopsided grin, the blend of yourself and your partner, the conduit of generations of familial traits. You may fear your parents won’t love your baby as much as they would, or do, their blood brood. And in a world that stubbornly equates womanhood with babymaking, where tabloids tout stories about 50-plus glitterati glowing with new motherhood, women on the cusp of ovum donation often find themselves feeling unfeminine, inadequate, stressed out and – no surprise – very, very angry.

We’re furious “at the gods and the powers that be,” notes Dr. Judith Horowitz, a Florida psychologist specializing in fertility issues. Our doctors may also feel our wrath, she says, when we demand to know why a Jane Seymour or Cheryl Tiegs can procreate in their 50s? “People feel betrayed,” says Horowitz. “They ask, ‘How come my doctor didn’t tell me in my 30s I’d better hurry up and have babies?’ ”

But after weathering the rage and regret, couples may see egg donation as “a pretty good compromise,” Horowitz notes. Those choosing it often are older and anxious about some of the potential, well-publicized, albeit not usual, complications of adoption – babies not bonding, the birth mother changing her mind, an adoptive child who may reject them in the future, she observes. “With egg donation,” says Horowitz, “you can bond with your baby for nine months, and (often) give your partner a genetically linked child.”

ARE YOU A CANDIDATE?

Though nationally the average age of donor-egg recipients is 42 to 43, candidates may be any age struggling with a variety of medical conditions. It could be ovarian failure – menopause or ovary loss. Or maternal-side genetic factors for which there is no way to screen your embryos. Perhaps you’ve been through IVF, but the embryos were of poor quality or failed to implant. And with age a common factor, there could be evidence of diminished ovarian reserve: Tests show your levels of follicle-producing hormones are way off. Your specialist may also have given you a more intensive ovarian function test, with disappointing results.

When your doctor tells you your best hope lies in someone else’s egg, “this is tragic information,” says Dr. Surrey. “There’s a lot of stress.” It may take you days, weeks or months, but experts say you should mourn and resolve the loss of a biogenetic child before deciding whether to seek an egg donor. Then work through these difficult questions:

• Will I be emotionally comfortable carrying a baby not genetically linked to myself?
• Will I love this child as I would my genetic-linked offspring?
• Am I doing this to assuage my guilt at not giving my husband a baby, or because I want to be a mother to a child at all costs?
• Can I deal with the attitudes of family and friends about egg donation? What would I tell them, and the child, about the baby’s conception?
• As a couple, can we fully accept this child, even with a birth defect?
• Can we accept that we won’t know everything about the donor?
• Can we afford this? The entire process typically costs at least $15,000, and only some of the IVF procedure may be covered by insurance.

Take your time. Get as much information as possible, from medical and psychological experts, from peer and patient support groups. Medically speaking, says Dr. Surrey, there’s no rush. “The beauty of egg donation is pregnancy rates don’t change much over the next couple of months. But if you make the wrong decision, it’s a big problem.”

Whatever your concerns, you need to resolve them with unflinching honesty. Dr. Horowitz advises couples not to proceed until they’re ready: “You don’t want them to look at this child as not theirs and be unable to bond.”

THE DONOR HUNT: Clinics, Agencies or Do-It-Yourself

Going forward with egg donation opens the door to, literally, a lifetime of choices and complexities. One of them is finding your donor. First decide:

• Will the elusive egg be found in a relative or friend, through a donor agency or your IVF center’s egg donation program?
• Will you go for an anonymous donor, with your clinic or an outside agency doing the screening and making the donor-recipient match?
• Or do you want semi-anonymous donation, in which photos and other information may be exchanged through agencies?

There’s no “right” decision. What’s most comfortable for you is best. But if you go the agency route, how do you choose one? Type “ovum donation” into your Internet search engine and your hard drive will be flooded with fertility clinic and agency sites offering services for every taste and budget, from the reasonably priced to the exorbitant, some claiming access to the DNA of gorgeous potential Nobel Laureates. Don’t panic; do your homework.

Some guidance in choosing a donor program:

• Are the fees appropriate? Though they vary wildly by geographic location, costs that climb beyond compensation for donor time and effort – say, to more than $10,000 – may raise the big ethical question: Is this fair compensation or buying eggs? With everything included – donor compensation, medical procedures, lab costs – be prepared to pay anywhere from a low of $15,000 to a high of $25,000, on average.
• How well does the agency or IVF center screen prospective donors? Does it follow American Society of Reproductive Medicine guidelines recommending genetic and psychological testing as well as screening for sexually transmitted diseases and family histories?
• Will the agency or clinic disclose its own history: its track record of successful matches and births, financial practices and policies – essential information for recipients?
• Can the agency or clinic offer some confirmation that the donor has good fertility potential, i.e., she’s been pregnant before?
• Will it screen you, the recipient, as well? The psych consults of recipients and donors are crucial, experts say. Evidence that either woman – or the recipient’s husband, for that matter -- is being coerced, in particular, is a red flag that should at least temporarily block the procedure, pending psychotherapy and reevaluation.

Be wary of IVF practitioners who don’t follow widely accepted screening norms. Among the classic excuses, notes Dr. Horowitz: “‘I have a small center, I’m a very good judge of character, I intimately know my patients and I know a good candidate.’” These practices are “not living up to the standard of care.”

The more “compulsive” the clinic or agency in selecting donors, the better, says Dr. Surrey. “It’s more than just saying, ‘I want someone with brown hair and brown eyes and writing a check,” he says.

Or you could find a willing woman on your own through ads, the Internet or word of mouth. This requires you to be well-prepared and grounded. Be picky, list your particular criteria and have an arsenal of questions ready so you can elicit the things most important to you. You’ve got to be able to sort through an enormous array of details and stories dispassionately enough to make a choice you can live with forever.

THE NEED TO KNOW, THE RIGHT TO ASK: AGENCY URGENCY

While it’s almost impossible not to be mesmerized by the potential of a successful pregnancy, you’ve got to remain alert and vigilant when choosing a program and donor. Arranging for egg donation puts thousands of dollars – and lives – in play, and the stakes are sky-high.

Agencies
On the agency front, Dr. Andrea Braverman, a psychologist with Pennsylvania Reproductive Associates, an egg donor program, cautions that “there are no professional standards for any of these agencies.” She urges every client to think long-term and ask, “Is this an agency that started up six months ago, and where will it be 16 years from now? Do they have plans for storage of records? Do they have backup in (case of) a fire? How are they making their profits? Is there pressure to select donors? And when somebody’s saying ‘yes’ to a donor, is the donor ready to cycle” – available and ready for the procedure?

Before you ante up for a donor, be clear about your agency’s refund policies, says Patricia Mendell, MSW and a prominent therapist specializing in infertility.

“If recipients put down a fee and the cycle is canceled before egg retrieval,” many agencies apply the fee towards another donor, notes Lisa Ward, (director?) of the Boston-based agency Tiny Treasures. But “a lot of agencies won’t. They keep the fee. A lot of couples have lost a lot of money.”

Recipients’ financial responsibilities toward the donor – whether they’ll pay for “food, lodging, taxi, lost wages” -- should also be clear, says reproductive attorney Melissa Brisman.

How much will you really know about the donor’s history? Unless she’s your sister – and even then there are no guarantees – accept the fact that you can’t know everything. Not all of a donor’s claims may be verified by an IVF center or agency, Mendell points out. All the more reason to use an IVF program or agency that’s up-front and thorough.

Lisa Ward, an “experienced donor” herself, pre-screens donors with 14- to 15-pages of questions including health and family history. But she’s clear with potential recipients who are edgy about a donor’s claims being verified: They can’t.

“I tell people this is a risk-taking process,” Ward says. “Egg donation is a leap of faith. They need to be comfortable with the fact that they’re not going to be able to verify every single thing.”

Some experts, like Dr. Horowitz, believe a national donor registry – to track donors’ health updates and other data – is essential under the circumstances. “We don’t want half-siblings getting married,” she notes. And a registry could make vital health information available if needed by a child conceived with donor eggs - although many agencies already require donors to agree to future contact by the recipients or child in a health crisis.

CHOOSING THE DONOR

When it comes to selecting a donor, experts vary on what’s important, but agree that realistic expectations are key. Lisa Ward says she has come across couples searching for “their idea of a perfect donor” -- specific SAT scores and physical attributes. “They’re not going to get it,” she says.

Ruth Tavor, who put an ad in an Israeli newspaper to find her own donor after waiting five months for an IVF center to produce one, and now runs her own New York agency, tells recipients to “keep it simple. Don’t try to invent this child, because you can’t anyway,” she advises couples.

The fundamental, say experts, is good health. Ward asks her recipient clients to “look at what’s important to you” and prioritize preferences.

“Ascertain what issues you can manage and can’t,” says Andrea Braverman. For example, if you’re anxious about people suspecting the child isn’t your biological offspring, look for a donor with physical characteristics similar to yours. But, adds Dr. Braverman, “The bottom line is you have to be prepared to love any child you’re going to get. It cannot be conditional love.”

TIMING IS EVERYTHING

You’ve chosen your donor; the match has been made. It’s time for the procedure. As your donor goes through her preparations, you’ll go through a parallel process:

• Your ovulation cycle will be synchronized with the donor’s with an injected hormone such as Lupron, so your uterus can receive the embryos a few days after eggs are taken from the donor and fertilized.
• You’ll take the hormone estradiol to thicken your uterine lining.
• Estrogen, which changes the uterine lining to make it easier for an embryo to implant, is next.
• Two to three days after the eggs are fertilized the embryos are ready for transfer. Your doctor may wait a little, selecting more developed, more viable blastocysts– usually two to three -- for transfer.
• During transfer, your doctor passes a thin tube containing the embryos through your vagina and cervix, and deposits them into your uterus.
• After that, there’s estradiol and progesterone for about two weeks. Then comes the nerve-wracking pregnancy test. If it’s positive, you continue on the hormones in early pregnancy. The medications should not cause many side effects, but you may have breast tenderness, water retention and mood swings.

The questions surrounding egg donation do not end here. If you conceive and give birth, the issues of disclosure, of your child’s physical and psychological well-being -- will reverberate throughout his or her life and perhaps through many generations.

Even with anonymous donation, it is possible to maintain contact with the donor for medical or other reasons through your IVF program, donor agency or another third party. As for other kinds of contact, it is a matter to be negotiated between you and your donor.

“I have couples who will put together a scrapbook of the prospective donor’s profile to give to the child later on,” says agency director and donor Lisa Ward. “Others want nothing to do with (that).” Either inclination is fine.

The key to deciding wisely is to know and be true to yourself. After all, you are making a lifetime commitment. “Don’t lose sight of what’s important, and don’t get consumed by the process,” says Ward. “You’re going to love the child no matter how the child comes out.”